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Christina Member in Phase 3 
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Today started 40mg Benicar Q8H. Stopped 200mg Mino last Thursday. * Diagnosis: RA, joint pain/inflammation in all joints. No organ involvement. * Phase 1 * Current meds: 40mg Benicar Q8H, probiotics, darvocet, noni juice for pain. * D results: 12/20/05 - 1,25D = 28, 25D = 28. * NoIRs - yes * * Are you wearing NoIRs inside and out - yes * Avoiding Vitamin D & sun/lights: 75% of the time but will be more careful now * Have you blocked your windows - most, will spend most time in dark rooms * How often do you go outside - about 5 out of 7 days a week. * How long do you stay outside - Including drive times about 1 hour per day * When going outside, are you covering up completely - mostly but will now * Taking Benicar - yes starting today * Start date of Benicar - 3/5/2006 * Dose mg /schedule of Benicar - 40mg Benicar Q8H but will start Q6H tomorrow * Taking Minocycline: no * Mino start date: will start therapeutic dose of 25mg Q6H tomorrow * Dose mg /schedule of minocycline - will be 25mg Q6H tomorrow * Any other antibiotics? No * Have you contacted your Dr. Please make sure your Dr is kept up to date with your progress and any suggestions made on the Board. - will at end of week. * Are you, have you been taking steroids: not for over a year. Ceased Jan 2005 * Other antibiotics: Minocycline 200mg daily. Ceased 3/2/2006 * Are you, have you been taking other medications: no * Anything else we need to know. I have osteopenia due to pred overuse. Hello all, I have begun what I hope to be my cure for this horrible, crippling disease. I started Benicar only this morning and have only taken two doses so far. My next one is at 11:00pm. I think I'm going to move to Q6H because I am in tremendous joint pain. I have had no other symptoms to suggest it's any kind of herxing, so I'm thinking this is probably good ol' arthritis. Since I feel so bad, I'm going to start 25mg of Minocycline Q6H starting tomorrow morning. My question is if the Mino helps relieve my RA symptoms, how am I ever going to start the true MP? I'm afraid the pain will be too intense for me to ever go to an every other day schedule of Mino. Do you have any suggestions or encouragement? I am devoted to this protocol entirely so I will do what I have to but, I'm hoping I can figure out how to do it without intolerable pain. Although I feel terrible I am still excited that I have started the MP. Christina |
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Aussie Barb Research Team 
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Hello Christina Welcome to the Report Forum and to MP. Thank you for filling your details so well.. very helpful to you and to those reading.. I will move this report to the mino forum when you have begun the mino. for continuity. We would expect Pain / Symptoms may be exacerbated by any light exposure. see PAIN CONTROL Why do I have to stop taking supplements? re Noni Juice. Why is my 'herx' more intense after exposure to Light & / or Vitamin D? Natural light > protect skin and eyes.. Artificial light > protect eyes / not skin.. re mino start: as soon as you start avoiding light and taking Benicar you have started the MP. Achieving tolerable herxing is always the aim. Tolerable herxing is achieved by adjusting the meds to suit you as an individual. It may be difficult for you to assess how to adjust the mino schedule to your best advantage until you are diligently avoiding light.. as light exposure itself will cause hormone fluctuations/symptoms.. Here are the Tools to check: to help you. The Essential Information is in ABOUT THE MARSHALL PROTOCOL and all links alphabetised in the ABC of MP Let us know if you have any questions. all best, Barb ... |
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Christina Member in Phase 3
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3/5/2006 - started 40mg Benicar Q8H. Stopped 200mg Mino three days before. Hello again, I am feeling quite a bit better today. Not as good as when I was taking 200mg mino daily but definitely better than yesterday. This morning at 6am I started taking Benicar q6h as opposed to Q8H and I also added 25mg mino Q6H. This does seem to be helping, thank goodness. I'm guessing my symptoms level off, I can begin reducing the mino to Q8H, and then Q12H and see how if affects me? When do you suggest I try this? Thanks for your help.............Christina |
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Aussie Barb Research Team
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Christina You will begin to feel when you can extend the mino schedule. no hurry. all tolerable herxing is killing bacteria. tolerable is the aim. always. Barb ... |
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Christina Member in Phase 3
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Thank you Aussie Barb. I might try to go Q8H on Thursday afternoon and see what happens. I don't have to go anywhere for four days and it would be a good time to test it. I should be able to lock myself in my dark house for the entire time. That way I will know it's not the light. Thanks! Christina |
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Christina Member in Phase 3
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3/5/2006 - started 40mg Benicar Q8H. 3/6/2006 - changed Benicar to Q6H and started mino at 25mg Q6H. Hello all, I am still taking the therapeutic dose of Mino to stop the arthritic pain, but today I felt different sensations. I felt more fatigued and lethargic, muscles felt weaker, felt a little light headed and my blood pressure was lower than the last four days. No big deal really. The only weird symptom I'm getting is itchy skin all over. I don't have a rash or redness, just itchiness. I've noticed that many people have mentioned itchy skin as a herx. I'm hoping that's what this is and not just an allergic reaction to Benicar. I'd really be bummed if I couldn't do this because of an allergic reaction. Is it possible to herx so soon after starting Benicar and mino, especially when the mino is at a dose that's supposed to stop herxing? Thanks, Christina |
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Aussie Barb Research Team
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Christina The ARB (Benicar) and the antibiotics do not cause the symptoms; they make the symptoms evident. The cause is your inflammatory disease. You may not require the mino dosing to be as frequent as Q6H.. I am going on the extended schedule that was holding your symptoms pre MP. You may have to experiment some with adjusting your medications to find the schedule which will achieve tolerable symptoms for you.. see FAQ and the links within for some options. My Herxheimer reaction is too strong. What should I do? let us know if you have any questions. all best, Barb .... |
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Christina Member in Phase 3
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3/5/2006 - started 40mg Benicar Q8H. 3/6/2006 - changed Benicar to Q6H and started mino at 25mg Q6H. 3/9/2006 - changed mino to 25mg Q12H. UPDATE: Thankfully I feel pretty good on Q12H mino (better than Q6H). I've been on that schedule for a couple of days now. I don't really feel like I'm herxing or flaring right now and my energy level was better today than yesterday. No more weird symptoms. Could this be a good time to lengthen the mino cycle to Q24H or maybe even Q48H to see how I respond? I'm really starting to realize how very important it is to stay out of the light, as diligently as you say to. I've been much better about it over the last couple of days and wonder if this is why I feel a bit better. I'm thrilled to know that I can have more control of the flare-ups of this RA. I think between control of diet and sun exposure I can work with the MP with a "clean slate". I know I must so I can tell when I'm herxing and when I'm not. The fact that I had weird symptoms is really encouraging. I'm ready for more....I want to see what happens next. I almost welcome the strange symptoms because not only does it validate this protocol but I sometimes welcome different sensations than joint pain. So far the joint pain has been tolerable, and I can handle the other stuff (so far anyway). We'll see what happens in the future but I'm glad I have ways to control it (i.e. changing mino schedule). Please let me know what you recommend next. If I understand correctly, I think I should move to 25mg Q24H for a couple days to see how I handle it? Am I right? Can I go to 25mg Q48H or is that being hasty? Thanks...........Christina |
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Aussie Barb Research Team
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Thanks Christina You are gaining experience with the symptoms and that is all good. This will stand you in good stead. You may extend the mino schedule, and you will be able to see for yourself how far you can take it while keeping all at tolerable.. I will add... without pushing the tolerable.. you can adjust your Benicar to Q4H when necessary as well.. for light exposure and symptom management. all best, and let us know if you have any questions.. Barb ... |
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Christina Member in Phase 3
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3/5/2006 - started 40mg Benicar Q8H. 3/6/2006 - changed Benicar to Q6H and started mino at 25mg Q6H. 3/9/2006 - changed mino to 25mg Q12H. I was due to take my next 25mg mino today at noon. I did feel more stiff and sore this morning but not too bad. I am not experiencing any "strange" symptoms so I decided to go ahead and skip this mino dose and see how I feel today. If it becomes hard to deal with I will take it and/or increase the Beni to Q4H. I hope I feel some herx today because by noon tomorrow it will have been 48 hours since my last mino dose. I'll keep you posted. Thanks for being there. Christina |
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Christina Member in Phase 3
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3/5/2006 - started 40mg Benicar Q8H. 3/6/2006 - changed Benicar to Q6H and started mino at 25mg Q6H. 3/9/2006 - changed mino to 25mg Q12H. 3/11/2006 - changed mino to 25mg Q48H. Hello, I took 25mg mino at noon today which was 48 hours since my last dose. As of now, I am not feeling any different at all. If I don't herx on this cycle, what does this mean? Thanks...........Christina |
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Aussie Barb Research Team
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Christina see the self assessing herx checker FAQ Why isn't the Marshall Protocol working? what am I doing wrong? to check all essential aspects.. also your 25D was 28 so that can have a bearing on no herxing as well. also It can take some time for the abx to kick in.. or it can kick in at any time.. we recommend following all precautions / instructions in the Phase One Guideline and for more ideas, also see FAQ I'm eager to get well. How can I speed up my progress on the MP? all best, Barb ... |
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Christina Member in Phase 3
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Oh Oh, I was just reading about how to divide the dosage of mino into 25mg. I didn't realize it was imperative to put the remaining mino back into a capsule and air tight container. The dose I took this morning was out of it's capsule for at least 48 hours (more like 60 hours). I'm thinking it was probably dead. Do you agree? I am using 100mg capsules (because I have many of them left from my AP therapy). I was dividing them four ways which I suppose I shouldn't do. Once the capsule is opened (and then closed tightly) how long does the mino keep it's potency? I'm learning  ...............Christina |
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Aussie Barb Research Team
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Christina The mino could very well have lost its potency. is best to always keep it covered sealed. Once you divide it and keep it in capsules etc it should stay fresh for the limited amount of time you would need it to... we have no way of knowing. you can take a fresh dose whenever you wish and count the 48H from the fresh dose. Barb ... |
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Alayne Member in Phase 3 
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Christina, I have empty capsules to put the Mino into when I divide it. I make my Mino capsules 1-2 weeks ahead of time and they've never weakened. Or at least, so I think, because I've herxed every time.  Cheers! Alayne |
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Christina Member in Phase 3
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Mino Q48H, Beni Q6H Hello, After my mino dose two days ago, shortly after my joints felt a little worse and my right eye had mild conjunctivitis symptoms that mostly went away the next day (yesterday). About six hours before my next dose of mino (Q48H) I started to develop flu-like symptoms: fever (101.1 F), chills, achy muscles, headache, mild cough with deep breath and my joints were raging. At first I waited to see if it would pass at a tolerable level but it became worse and worse. I finally took my next dose of Mino and Benicar early and have temporarily changed the Benicar dose to Q4H and the Mino Q8H. This morning (7AM Central time here) I still have the same symptoms along with the same fever. It hasn't gotten much better. I was starting to believe the only herx I was going to get was the conjunctivitis herx. But about 42 hours after my previous mino dose I started the flu feelings and it got worse and worse. One think I want to mention is this happened after a glass of red wine with dinner. About an hour after the wine, this all kicked in. Did that have anything to do with it? What dosage do you think I should go with? Thanks, Christina |
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Aussie Barb Research Team
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Christina some may have some problems with particular foods or it may be coincidental. Phase One is the time to gain experience in how the meds work for you as an individual to manage your symptoms, and learn to be diligent with light. As soon as you feel a herx going toward intolerable, you can increase your Benicar as you have done, and you may take the mino 25mg dose to slow it if the mino works like that for you. You will be getting the feel of how the mino works for you yet. whether it will slow or cause a herx. Always go with the meds schedule that holds the symptoms to tolerable for yourself. tolerable is the key. and feel free to ask on the Board. If you are concerned do not hesitate to contact your Dr. see PAIN CONTROL Breathing Tips may be helpful. Will Herxing cause increased eye inflammation? EYE INFLAMMATION and Th1 diseases If you need temporary relief of your symptoms such as shortness of breath, nasal congestion, gastric upset or pain, contact your doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms. all best, Barb ... ps. did you stop the Noni juice? |
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Christina Member in Phase 3
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Thank you for all the info. I think the wine may have been a coincidence because the night before I also had one glass of wine and I didn't react. Yes, I discontinued the Noni Juice. Thanks, Christina |
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Christina Member in Phase 3
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Hi Alayne, Thanks for the advice. I do need to find those. Does Walgreens sell empty capsules? Thanks, Christina |
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Alayne Member in Phase 3
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Christina, I've never been able to find the capsules in drugstores. Health stores or health food stores carry them though. Try Wild Oats, or The Vitamin Shoppe, or whatever you have locally that's equivilent (call first!). I use size 0, but that's because I also crush my Benicar. You can get smaller sizes for the mino if you want, although the bigger capsules are easier to scrape the powder into. -Alayne |
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John McDonald Foundation Director 
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I rarely have alcohol since getting RA, mostly because of the meds. Since starting MP I have had modest alcohol twice and each time felt terrible the next day. One of these times was in the Philippines during an MP break after being off all abx for around 20 days, but still on Benicar. I figured that was safe enough to enjoy some wine but I got sick for 2 days including fever and joint pains. Was it the alcohol? Who knows, I don't? But I am even more shy of it now. I figure that it is hard enough to manage herxing without throwing in that elective drug and besides, the sugar can't be good while on the MP. I do plan to enjoy wine with some meals when I finish the MP in a year or two. I'm also going to eat an entire raw sushi Tuna when I graduate. |
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carol Moderator 
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Christina: I really enjoy a glass (or two) of wine. During Ph 1, this was no problem for me. Then I went through many months on Ph 2 during which it just did not agree with me to drink alcohol. Now I'm back to enjoying it regularly  .Carol |
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Christina Member in Phase 3
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Benicar = Q6H; Mino = Q24H UPDATE: I don't really have much to report. The last few days have been relatively "normal" with a good RA day, a bad RA day, and a recovery day. It feels much like plain ol' RA and nothing herx-like. I have decided to skip my dose of Mino today to see if anything happens. 48 hours will have lapsed by 9am tomorrow morning. I'm really curious to see if I herx like I did last week after this dosage. Might take a couple intervals. Like everyone keeps telling me....."no hurry"....and I agree. I'll touch base tomorrow if I get whacked out again.  Thanks for being there, everyone! .............Christina |
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Christina Member in Phase 3
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Benicar 40mg Q6H; Mino 25mg Q48H Woke up this morning with only regular arthritic pain and no noticeable herxing. Took my next 25mg mino dose. I'll see what happens this interval. |
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Christina Member in Phase 3
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Benicar - Q6H; Mino - Q48H UPDATE and question: Woke up this morning with really bad arthritis pain but no other herx-type reactions. It's so hard to tell if the arthritis pain is herx or not when there aren't any other symptoms with it. I did start to feel worse yesterday after I took my Mino dose. The RA pain seemed to get worse and worse through this morning. I'm hoping it's herxing but the plain RA acted much the same way. If I don't show any other signs of herxing this interval, should I change anything? How do I know when I've exhaused the Q48H dosage? Thanks...........Christina |
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Aussie Barb Research Team
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Christina Posting your meds dosage in your index would be helpful, thanks.. are you still taking the mino at 25mg.. and you have said today is day 2 of your QOD dose. thanks. Phase One is the time to gain experience in how the meds work for you as an individual to manage your symptoms. Why do we take minocycline only every other day? Why do I feel worse on the second day? If antibiotics are effective at very low doses, why do we ramp up the dose? When your symptoms increase, if you are finding it difficult, you can try the extra Benicar or any of the options as per the FAQ Do not hesitate to use any of the meds adjustments. This will help you to work out what is happeneing and how best to manage your symptoms. My Herxheimer reaction is too strong. What should I do? .. Check the precautions and the options one at a time to assess and adjust your own situation. Tools to check: << if having problems please feel free to ask on the Board. thank you. If you are concerned do not hesitate to contact your Dr. all best, Barb ... |
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carol Moderator
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Christina: I always found it reassuring when I had oddball (not typical of RA) herx symptoms because it was so clear that there was no other explanation for these except herx. However, what I really wanted was for my joints to be the center of attention, and I had to wait for many months for that to happen. Maybe you’re already there. Now that most of my herxing is joint pain, I can tell you that my herx joint pain feels just like regular ol’ RA joint pain. There is good evidence that the joints of folks with RA are loaded with 1,25-D (see Mawer, EB; Hayes, ME; Still, PE; Davies, M; Lumb, GA; Palit, J; Holt, PJ. Evidence for nonrenal synthesis of 1,25-dihydroxyvitamin D in patients with inflammatory arthritis. J Bone Miner Res. 1991 6(7), 733-9) which means they are loaded with CWD bacteria. I wonder if those with high blood levels of 1,25-D (like Ival and me), are the ones that experience a lot of “whole body” herxing. Perhaps when the 1,25-D is not so elevated (like you and John), you skip over a lot of this and get to the good part, the joint herxing, sooner! A time-concentration curve for minocin appears in several threads, including this one. Can you miss killing pathogens This was very interesting to me back then because I was going through a period when I dependably experienced a herx approx 2 hours after I took the mino and then again 16-18 hours afterwards. This pattern made sense when I saw that I was probably passing thru the same region of the concentration curve on the “front side” and then again on the “back side”. Could this be what you are experiencing as well? You mentioned starting to feel more joint pain shortly after taking the mino. Even though I really like this time concentration curve, it is also true that many of us seem to be able to “milk” more herx by extending the time between mino doses out past 48 hours. My understanding is that this could be due to “sluggish” clearing of the mino from the body or entering into a state in which the immune system can continue the bug killing without the help of the mino. You already know that frequent mino dosing can put the breaks on the herx, so playing with extending the interval may be a logical thing to try. I know this can all be so overwhelming. But just remember, you are surely killing bugs tonight and that’s all that really counts! Carol |
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Ival Moderator 
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Hi Christina I'm just gonna give you the reader's digest version of what happened to me in phase one. I had already been taking mino for two years prior 100 every other day for almost a year and then another year all the way to 200 everyday. When I started the M. P. the first week at 25 of Mino gave me the worst fatigue and flu like symptoms I had ever had in my life. After the first week pretty much nothing happened so I increased to 50 and the same thing happen again flu like symptoms for close to a week. And then nothing again. It was not until I got to 75 of Mino that I started getting consistent Herxing. that is the level that I started to learn how to control them better at the lower levels it was all or nothing at least that's the way it was for me. Another thing I remember in phase one is sometimes I would have all this crazy Herxing going on and it would make my joints feel better so when that happened I would keep everything the same because it was so nice to get some relief in my joints. But other times it would be the same Herxing except my joints would be going crazy when that happened I would frequently start taking the Mino to try to slow them down. If you think that the 25 Mino is why your joints are hurting I would recommend staying at that level and you can even go to three days in between the Mino but if you fill it is not doing anything it may be time to increase that's kinda what I feel your next decision should be. Plus keep good notes on what happens when you change stuff it will come in handy later on. I feel this is the hardest thing where ever going to do in our life but it sure beats the alternative a lifetime of getting worse. Ival Last edited on Thu Mar 23rd, 2006 17:41 by Ival |
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Christina Member in Phase 3
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Benicar Q6H; Mino 25mg QOD UPDATE: I have taken my fourth 25mg QOD dosage today at noon. Over the past six days or so my oddball herxes are gone and my joints have been the center of pain and inflammation. The pain has been pretty consistent, with only minor fluctuations. I am thinking I might stretch this interval to 72 hours to see what happens on that last day. I'll keep you posted. Christina |
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Christina Member in Phase 3
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Benicar 40mg = Q6H; Mino 25mg - Q72H UPDATE: Today is my third day of my Q72H trial. So far so good. The arthritis pain has improved today compared to the last several days. No noticable herxing so far. If the rest of the night remains calm then tomorrow I will take my first 50mg mino dosage at noon. Christina |
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Aussie Barb Research Team
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Thanks Christina Phase One is the time to gain experience in how the meds work for each as an individual, to manage symptoms. adjusting the dose and schedule, eg as you have done by the extending - helps to gain experience by getting the feel of the changes in symptoms/herxing levels. all best, Barb ... |
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Christina Member in Phase 3
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Benicar Q6H; 50mg Mino QOD UPDATE: Today is my second day of my first 50mg Mino QOD dose. I haven't felt any different so far. The arthritis has been surprisingly calm over the last couple days. I do wonder about tonight though, because if it's anything like my first QOD of 25mg mino, I should start feeling bad overnight (maybe 4-6AM). If it turns out that way, I will be astonished. Here's to a good herx (but not too good). Christina |
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Christina Member in Phase 3
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Benicar - Q6H; 50mg mino QOD I took my second 50mg QOD mino dose today at noon. I did not herx at all last time. I still haven't herxed yet, however my joints seem to be getting more stiff and sore this evening. There is a possibility I got more sun today than I should have. I wore dark clothes and my gloves during driving and my glasses most of the time, but the wind kept blowing my hat off and I needed to see clearly (without glasses) at the store today. All in all, I think I did pretty well today, but lately I have been really diligent about avoiding light. I don't go out much anymore. That could be why I am starting to feel bad arthritically, however, I was out of the light by 2:45 this afternoon. I thought I'd feel bad sooner if it was the light. So, who knows. We'll see what happens overnight. I'll keep ya posted! Christina |
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Christina Member in Phase 3
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Benicar - Q6H; Mino 50mg QOD Yesterday at about 2pm (about 26 hours into my last mino dose) my joints gradually started to feel more and more stiff and inflammed. By the early evening I had to take a Darvocet for the pain which is unusual. Overnight it became pretty bad and this morning it was worse than it's been in a long time. I also had frequent urination which seems to be positively correlated to my pain and inflammtion. The only other symptom I had was itchy skin in various places that seem to come and go. Also my eyes feel sort of itchy but it's not too bad and that seems to be worse first thing in the morning. I took my next 48 hour dose of 50mg mino at noon today. My joints feel a little better as of now (3:30pm). So far it's nothing I can't tolerate. Luckily I don't have to work or go anywhere so I'm able to tolerate more. I hope tomorrow is better as I have to be in the car for four hours - and I'm not looking forward to the sun exposure. I think it's supposed to storm so hopefully the UV index will be lower. I'll cover everything I can. Until next time....... Christina |
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Aussie Barb Research Team
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Thanks Christina If needed you can adjust your MP meds to hold the herxing to tolerable at any time.. also re going out: a reminder: Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal.. What precautions do I need to take when I am going out or when traveling away? all best, Barb ... |
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Christina Member in Phase 3
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Benicar - Q4H (last 24 hours); 50mg mino QOD Took my next 48 hour 50mg mino today at noon. I have been herxing pretty badly (joints only) so I am going to include some "in between dosing" of 25mg mino every 12 hours. I will take 25mg tonight at midnight and again at noon tomorrow, then midnight tomorrow, then 50mg at noon the next day. At least that is the plan for now and see if that helps. If it doesn't I'll try 25mg mino Q6H between 50mg QOD dosages. I hope I'm understanding this correctly. Thanks..............Christina |
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Aussie Barb Research Team
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Thanks Christina Decreasing your mino dose to 25mg QOD may even be an option.. to assess herxing at that level. all you can do is try the dosings and schedules and see what is best for you to achieve tolerable herxing.. all best, Barb .... |
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Ival Moderator
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Hi Christina Your next 50 Mino should be skipped and turned into 25 if you are going to frequent mino DOS every twelve hours. But other than that it sounds pretty good . Just going back down to 25 Mino every 48 hours would be another option. Ival |
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Christina Member in Phase 3
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Benicar Q6H; 25mg mino Q6H (to control herx from 50mg QOD) I feel better today than the last three days, slightly anyway. I think I am coming out of this major herx, however I am concerned about one thing. The inflammation is much more prevalent than it has been in a long time. While I was taking 200mg Mino daily (original AP) my swelling had gone down significantly although the pain was still there. Now I have pain and swelling in my joints, just like I used to before I took any antibiotic therapy at all. I'm concerned about joint damage. I know Dr. Marshall states the Benicar should protect the joints but should I be seeing so much inflammation? If I continue the frequent dosing to control the herx, will the inflammation come back down? Thanks, Christina |
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Aussie Barb Research Team
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Christina You can also use the Benicar Q4H. and then adjust your mino schedule to make sure that frequent mino is helpful to you. It may not be as helpful as dosing mino 25mg QOD or extended out to 3 days... it is a matter of trying it in the different time schedules to see which suits you best. Let us know how you are going. all best, Barb ... |
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carol Moderator
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Could Christina try 50mg every 6 hours for her frequent mino dosing? This would be equivalent to the 200mg daily she took in her pre-MP regimen and it helped control inflammation. Ival, John, Aussie Barb, Christina: what do you think about this? Carol ps, editing now: I just went back and checked my phase 2 progress reports from last May. I reported that I took 100mg mino every 12 hours for 10 days to minimize herxing for a family visit. I also reported that 100mg seemed to work better than 50mg so that's why I used the higher dose. I had forgotten about this. Thank goodness for progress reports. Last edited on Wed Apr 5th, 2006 22:46 by carol |
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Aussie Barb Research Team
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Thanks Carol When Christina stopped her mino she didnt continue to herx as some do ie she didnt require the frequent mino as some do.. Some do get worse with more mino and do better by extending the dose, so it would be preferable to try the options one step at a time as per the intolerable FAQ before moving to any off the board options.. My Herxheimer reaction is too strong. What should I do? Dr Marshall recommends not taking more than 100mg mino when taking the Benicar. If Christina is happy to work thru the options, making sure of following all the essential aspects, Phase one is a time of learning by experience just what does work best for each as an individual, so that this experience can be taken forward to be used in the future.. Thanks for your watchfulness, all best, Barb ... |
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Christina Member in Phase 3
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Benicar Q6H; 25mg mino Q6H to control herx from 50mg mino Not doing too well. Still hurt and still inflamed. I am going to continue the frequent dosing Q6H until the morning, and if I have not improved I will lengthen the interval on the 25mg mino until I stablize. Carol, thanks very much for the suggestion. I am always open to ideas. Christina |
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Ival Moderator
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Hi Christina It is so tough at the beginning to figure out what is happening to make the best decisions . So I will just run some of my experiences and thoughts by you at the beginning of phase one. What you are basically doing right now is trying to figure out if you're taking not enough or two much antibiotic for the Herxs. The signs I found out that help me the most to determine this was when you take the antibiotic can you feel anything at all happening. Do you feel any kind of relief after you take it does the pain stay the same or does it increase. Not only in the joints but do you feel anything else happening change in energy lightheadedness anything. Feelings like that can help you determine what side you are on too much are not enough. If you're getting no relief from the frequent mino possible you are on the side of too much. And lowering down to 25 over a longer period like you and Barb have suggested makes a lot of sense. At the beginning of phase one with me usually less was better but towards the middle and the end of phase one frequent mino work better . But this statement was not always true I did have times at the very beginning that more was better but not many. Carol I understand exactly what you're saying and towards the later stages of phase one I think that is a good move. But at the very beginning its a lot more probable that she's on the side of two much. The bad part about this Christina you're probably not going to know until it's almost over so hang in their the beginning is very tough. Ival |
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Christina Member in Phase 3
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Beni- Q6H; Mino - back down to 25mg I feel much better now that I have quit the frequent mino dosing. I will lay off the ABX for today and tomorrow so I can recover fully and then I will resume 25mg regimen on Saturday. Once I am stable I'll try 50mg, then alternate with 25mg to wean myself up to 50mg QOD. Christina |
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Aussie Barb Research Team
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Thanks Christina so pleased that you have some relief.. You may wish to continue with the mino 25mg QOD and / or every 72H till stable, and then when you feel you are comfortable enough to add more herx, you can go to 50mg. all best, Barb .... |
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Christina Member in Phase 3
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Benicar - Q6H; Mino 25mg QOD (again) I have laid off the mino for the last few days to recover from the terrible RA flare I got while taking 50mg mino QOD. I tried frequent 25mg mino dosing to control the herx but it didn't work. Since I stopped all antibiotic I seemed to "normalize" (which still isn't comfortable) but about 60 hours after my last 25mg mino dose I started going downhill again in my joints. As of this morning which was about 68 hours after my last dose I was feeling pretty bad again and that didn't happen the last time I went 72 hours. I am feeling discouraged because I feel like to matter what I do - take more mino, take less mino, take no mino, take more Benicar I can't seem to keep the flaring down consistently. I went ahead and took 25mg at noon today to get back to the 25mg QOD regimen. If I waited for my body to "normalize" and not flare, I'd be at 25mg mino for the rest of my life. I have had RA for 20 lousy years and it has moved into every possible area of my body because of all the immunosuppression I've had in my life. I know I need to achieve "tolerable" herxing, however my disease alone is NOT tolerable to begin with. So I'm not quite sure how I'm supposed to get "worse" before I get better because I am starting out practically incapacitated as it is. I am so scared that I am too sick to continue this but then too sick not to. I feel I am at a very important crossroad. For the last couple weeks this MP has felt like normal, severe RA and I've had very little (if any) strange herxes to convince me this is working. I want to have a good attitude about the "herxes" but I'm not getting any sensations other than severe joint pain, which is exactly how I would feel if I wasn't doing any of this. I really believe the science behind this and I so very much want it to be true, but I am really nervous that I am not responding as others have. I am nervous because I didn't have a high vitamin D level like others have (both 25D and 1,25D were 28), and you would think if anyone would have a high Vit D level it would be a person who has severe RA in every single joint in her body. I have osteopenia that I was hoping the MP would help with also. I am not taking any calcium supplements (and I can't consume dairy products) to build up bone mass because of the MP and I hope I'm not making a mistake. If I could just find a way to be confident this is working like it's supposed to this wouldn't be so scary. I am diligently avoiding all light and that's not making any difference. I have tried Q4H benicar and that doesn't make much difference either. I was really hoping the Benicar would be protecting me from the inflammtion much better than it is. I am going to ask my doctor for an NSAID when I see him on Wednesday but in the past these have not worked for me very well. Besides I need an NSAID I can take without eating and be able to lay down since I spend so much time in bed. Not many of those exist. I tried Celebrex years ago and it was like eating candy. My darvocet is not killing the pain as well as it used to. I have tried relaxation techniques, and have read "how to control herxes" and "how to manage pain" over and over on this website. I feel very desperate at the moment. Like I said, if I could have some sort of "proof" that these flares are really herxes I'd be relieved and also have a better attitude about the pain. Or if I could get just an ounce of predictablitly it would be better. I'm sorry to dump all this on you. Based on my story, do you think I have a chance at this? Christina |
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Aussie Barb Research Team
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Christina It is understandable.. Many do actually find that the getting worse to get better isnt as bad as the disease itself has been because of being able to adjust the meds.. Although adjusting the mino to frequent is an option that works for some, there are many for whom it isnt an option, and they learn how to use the meds as most suited to themselves. and you are in that Learning phase. and like everything new, it takes time to get the hang of it.. It is best to not be looking for what is a herx, thinking is this a herx, is that a herx... If you can continue by taking each minute as it comes, following the essential aspects, and doing what you need to do to keep the symptoms tolerable, you can have confidence that it is doing what it is meant to do.. Speak to your Dr about some serious pain medication to help you.. some find that the Valium helps with the pain also. PAIN CONTROL ... The Vitamin D results alone do not preclude you from the MP. The fact that you are reacting to the meds is proof that the MP is working for you.. see What is a therapeutic probe? re calcium: Osteoporosis and Th1 illness re Risk factors, BMD testing and other information Should I be concerned about osteoporosis? What does my bone density test mean? A Review - Vitamin D and Calcium in Sarcoidosis (7-5-03) http://www.sarcinfo.com/calcium.htm Don't I need to take a calcium supplement? Let us know how you are going, and we will assist you all the way.. Ival and Carol are happy to support and encourage you in any way they can also.. Do keep talking and asking.. it will help us all to help you in any way we can.. all best, Barb ... |
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carol Moderator
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Hi Christina: Too many changes too quickly can make for a confusing picture. I think your best bet is to pick a dose/interval and stick with it long enough to figure out what's going on. I'd suggest re-reading Phase 1 guidelines and see if anything "jumps out". Can you increase your pain med? At the risk of sounding harsh, I know you know the MP is the only way out of this mess. These are very early days for you and we just have to figure out. I wanted to call you but could not find your number  . Please feel free to call me.Carol |
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Christina Member in Phase 3
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Beni Q6H; 25mg Mino QOD Thankfully, today was a relatively good day. I was actually able to get a lot of errands done today that I had not been capable of doing over the last week and a half. I took the beni Q4H because of possible increased sun exposure and I felt pretty OK with it. It seems like this mino interval has been pretty consistent with the last one. When I took my dose at noon yesterday, I felt bad but today I felt pretty good. I expect that maybe tomorrow I might hurt (if it's like last time). We'll just see what happens. So far no weird herxes, only joint pain. I'll touch base with you soon. Christina |
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carol Moderator
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Christina: I'm so glad to hear things are evening out a bit. Be careful not to overdo on those days that you feel a little better. I realize that is very hard when you have two little ones that need you. Hang in there! Carol |
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Christina Member in Phase 3
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Beni Q6H; 25mg mino QOD Arthritis felt bad today which was supposed to happen based on my last several days. Perhaps a pattern is finally establishing itself. I won't cling to it too tightly because I know it can change without notice. I will hang out at this dosage until my symptoms even out a bit more. Tomorrow should feel better. I'm crossing my fingers. Christina |
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Christina Member in Phase 3
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Benicar - Q6H; 25mg mino QOD Well guess what.....I feel worse today dangit! I was "supposed" to feel better. I should stop predicting because it never seems to come true. I'll just keep hanging out at this dosage until I have some consistent days. That is what I'm looking for right? The RA seems to be behaving as if I'm not taking any meds. What happens if these flares don't stop? How will I ever know when I can increase my dosage? Thanks.........Christina |
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jrfoutin Research Team 
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The RA seems to be behaving as if I'm not taking any meds. Phase I is entry, so you may be herxing and doing disease symptoms on top of each other. Pain is your best buddy though, because you can track it and learn your own pattern for a better understanding of how to win your personal battle through the entire protocol. Do use a spreadsheet or some sort of "big picture" tool that helps you discover your own patterns in Phase I. Discuss those details with your doctor. Here is a tool you can use, or use for an idea for your own. Here is a blank one that you can just fill in your own symptoms. Remember too, we all come into the MP with a host of symptoms. We stay until ALL symptoms are resolved and we generally count the time it takes in years, not days. Just from me to you, patient to patient, I hope your most hated symptoms resolve earlier or at least calm down some. Best wishes to you and your dear ones. |
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Christina Member in Phase 3
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Beni Q6H; 25mg mino QOD I was reading some info on this website and I have a question regarding this quote: Dr Marshall: "The sensitivity to light is part of the disease process. The greater the bacterial load somebody is carrying, the greater will be their photosensitivity. There is both the generation of hormone 1,25-D in the keratinocytes, which is exacerbated by the circulating Th1 cytokines, and the extra load placed on the Amygdala by light on the eyes (see Brian Fallon's study for more info on their SPECT results Report from EICS Conference 19 Nov 2004 ). The 1,25-D generation in the keratinocytes will occur at lighting levels above that inside an office with the windows heavily shaded (eg with drawn vertical blinds), but the eyes adapt to the ambient light level (with the Iris) and must be kept away from stimulation in all environments. I have no photosensitivity in my eyes whatsoever. If I needed to remove my NoIRs outside for some reason it would not hurt my eyes in the least bit. Can someone explain this to me? Thanks..........Christina |
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Aussie Barb Research Team
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Christina Your lack of overt symptoms doesn't mean that exposure to the sun would not be raising your 1,25-D high enough to prevent the immune system from killing the intracellular bacteria. see THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS ON PERSONS WITH TH1 INFLAMMATORY DISEASE Thanks, Barb .... |
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Christina Member in Phase 3
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Benicar Q6H; 25mg mino QOD Feeling pretty bad arthritically today. About the same as the last three days. No other symptoms. I am going to skip my mino dose today because I don't think it's going to make any difference. I will start with 50mg again tomorrow and see what happens. I sincerely believe I am not really herxing as much as RA flaring right now. I think it might be time to move up again....and hang on tight. I also wanted to tell you my experience at the MP doc on Wed. He decided to draw some blood to make sure the Benicar isn't taxing any organs. I asked him to go ahead and take another 25D and 1,25D test while he was at it just to see what the results are. I know that 1,25D is irrelevant at this point because I've been taking Benicar but it was so low last time I wanted to see if it's higher or lower. I don't think they did the test correctly based on conversation I had with the nurse on Wednesday. When the nurse came in to draw my blood I asked her if she was going to freeze the 1,25D sample. She said "Oh, we don't need to do that anymore. Quest keeps changing it and their website says we don't have to". I told her it was imperative that it be frozen or the results will be inaccurate. She said she would call Quest after the blood was drawn and ask them how to handle it. I have learned my doctor's office is not a good place to get accurate blood tests. Talk to ya later, Christina |
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Christina Member in Phase 3
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Benicar Q4H; 50mg mino QOD Today was my first day of 50mg mino (my second attempt). I think it may have made me hurt a little more after I took it today at 1pm. I am now taking an anti-inflammatory that my doctor prescribed called Lodine. It seems to take the edge off the inflammation. Is a drug like this OK to take? Does it prevent the MP from working in any way? I know we aren't supposed to cool down a herx too often or the pathogens won't be killed. I wasn't sure if this includes NSAIDs like this one (it's similar to Ibuprofen in that it interferes with prostaglandin production). I really think this drug may help me get through these tough times. I may have gotten more sun exposure that usual today but I didn't feel any ill effects. I was pretty careful. Still no photosensitivity in the eyes. Happy Easter to all, Christina |
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Foundation Staff . 
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Hi Christina, It's okay to use Lodine to treat your intolerable pain. For more info, please see: Should I stop taking any of my medications? PAIN CONTROL Best, Meg |
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John McDonald Foundation Director
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Christina, We know that 50mg made you herx. The MP is working for you, you just haven't progressed very far yet. Don't worry about the eye sensitivity. You may get plenty of that later. One woman told me it didn't kick in for her until phase II. If I never got eye sensitivity but the MP worked otherwise, I can't say I would be disappointed; not at all, not even a little. Maybe you don't have any microbes in your eyes, or more likely they are resistant to these doses and dosing frequencies. Their time will come. Meanwhile, enjoy the best Easter Sunday with your family that you can. john |
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Christina Member in Phase 3
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Beni Q6H; 50mg mino QOD Today was my second dose of 50mg mino QOD (noon). I felt pretty bad all day today starting in the morning however I probably overdid the holiday weekend with sun exposure and food. Monday's are usually worse because the weekend is when I tend to fall off the "MP wagon". I was a pretty good girl mostly, but not as strict as usual because the circumstances make it so much harder. We had a lot of daytime driving. People's houses are too bright. Their food is more unhealthy and of course there is the problem of dessert. I went to a wedding Saturday that was two hours away and that didn't help, I'm sure. Anyway, I'm in significant amount of joint pain but I'm not sure if it's the 50mg dosage or the rebound from the weekend. I'll see what happens over the next couple days. I'm locked up in my dark house again for a while with more control over my food. The Lodine is sort of helping. It seems to help for a few hours but then as it wears off it makes it worse. I'm going to skip it tonight and reserve it for the morning. I guarantee the bugs are gonna have a party overnight. The mornings are always horrendous. I'll keep ya posted, Christina |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD Second day of second dose of 50mg QOD. I feel better than yesterday but it's still pretty bad (my joints). It's not intolerable so that's good. I haven't taken Lodine today so I suppose I should count that as success. I am doing laundry today and I am noticing the things I am not able to do anymore....at least for now. I hope I can get back the usefulness in my hands soon. My hands, knees, hips and shoulders all feel worse these days. The last couple nights before bed I've had bouts with major fatigue almost as if I'm going to have flu-like symptoms but it never really transpires. I am taking more pain medication now so maybe that's preventing the fevers and muscle aches. I have laid off the Lodine since I don't feel I absolutely NEED it and I am hoping it allows me to feel herx-like changes more accurately. Keep ya posted, Christina |
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Aussie Barb Research Team
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Thanks Christine This FAQ explains Why is my 'herx' more intense after exposure to Light & / or Vitamin D? other help: Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal.. What precautions do I need to take when I am going out or when traveling away? all best, Barb .... |
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Christina Member in Phase 3
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Benicar Q6H; 50mg Mino QOD Hi guys, I took my third dose of 50mg mino on Wednesday at noon. Wednesday was a pretty good day. I was able to attend an appointment without taking any Lodine or Darvocet. I would qualify it as an "above average" day. Yesterday started out fairly poorly so I took a Lodine to see what would happen. I felt really good once the Lodine set in and the second half of yesterday was a nice relief. I even felt fine when I went to bed, but this morning I was absolutely miserable. It may be the "Lodine rebound effect" that I usually get or perhaps it's herx or both. Today would qualify as a "significantly below average day". I have a lot of inflammation in my joints. I did go out for about three hours yesterday but I was very careful with covering up and wearing my dark NoIRs. I took my fourth dose of 50mg mino today at 1pm. As of 7pm I am still feeling pretty lousy. All joint pain and inflammation. I will take it easy the rest of today and hope for a better morning. Do you think it's possible that my "Lodine rebound effect" could be extra herxes? The Lodine decreases the inflammation and I wonder if that helps my immune system and the mino work more effectively? Maybe wishful thinking? Does anyone else have the issue where an NSAID actually makes you feel WORSE after it wears off? Or does anyone have any explanation for it? Talk to ya later, Christina |
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carol Moderator
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Christina wrote: Do you think it's possible that my "Lodine rebound effect" could be extra herxes? The Lodine decreases the inflammation and I wonder if that helps my immune system and the mino work more effectively? Maybe wishful thinking? Christina: I have no idea if this is indeed what is happening, but it certainly seems possible, given what we know about what is going on in our bodies. I want you to know that I read every one of your posts and will always comment if I think I have anything useful to share. This is a long, hard road but it is the only one that can lead to a cure. Hang in there, Carol |
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Christina Member in Phase 3
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Benicar Q4H; Mino 50mg QOD Hi guys, Took my sixth 50mg mino dose today at noon. I've been feeling pretty bad the last few days. Yesterday (Monday) morning was one of the worst so far. Sunday morning started out pretty normal but it got pretty bad as the day went on. I did take 50mg mino at noon so that might have been why. I also laid around a lot that day which seems to make me feel progressively worse. I think when I make myself get up and move around it keeps the RA in check somewhat. If I rest too much it seems to get worse. I didn't really come back to normal from the last dose but I went ahead and took the next one today anyway. I hope tomorrow feels better. My diet hasn't been perfect the last few days either but I was starting to notice I wasn't as sensitive to food as I used to be. Maybe I still am to a degree. I'll be better with the diet and see if that helps. I am sooooo ready to feel better. Talk to ya later, Christina |
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Christina Member in Phase 3
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Benicar Q6H; Mino 50mg QOD Hi everyone, Felt a little better last night and this morning. The inflammation didn't seem to be as bad and therefore the pain was lessened. I took my seventh dose of 50mg mino today at noon. I don't feel particularly good right now, but then my darvocet has worn off. I am not taking any painkiller or NSAID right now so that's good. I still feel better than I have over the last three or four days. It's all joint pain, nothing weird to report. I'll keep plugging along on the 50mg dosage until I feel better. Later, Christina |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD I feel surprisingly good today. Better than I have in a long time. It's a nice change of pace because the last week has been hell. I was due to take my next 50mg mino today at noon but I decided to skip it to see if my reprieve continues. I'm starting to see somewhat of a pattern that the day after I take the mino I feel the worst and the next morning before my mino dose I seem to feel better. I will see what happens today and tomorrow. Christina |
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Aussie Barb Research Team
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Thanks Christina, It is good to see you are getting the feel of it, and have had some reprieve.. all good experience building for managing your MP. all best, Barb ... |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD Get this.....I received a call from my doctor today with results from my blood tests. He said my 25D was down to 12 (so that's good) but he said my 1,25D was 28. I was on Benicar for a month and a half when it was taken, and my original non-Benicar reading was also 28. I thought for sure it would be lower. I'm thinking that the first reading wasn't correct. Or is it possible that the Benicar isn't working for me? Thanks, Christina |
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Aussie Barb Research Team
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Christina Please do not worry. see the detailed Information in the FAQ How often should I test D levels? What are the target numbers? all best, Barb ... |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD I have a question. Yesterday was one of the best days I've had since starting the MP and it was a nice surprise. To prolong the feeling I decided to skip my noon dose of Mino to see if it is the mino that makes me feel bad (like it's supposed to). Unfortunately I am unable to confirm this because last night I started swelling up and hurting in my joints and this morning was back to the same ol' thing....very swollen and painful. So I suppose it's not the mino. HOWEVER one thing I did incorrectly yesterday was instead of taking my normal Benicar at 6pm, I took it at 8pm because I didn't have any with me (I know...my bad). I started feeling the inflammation and pain coming on at about 7:30pm. Do you think that the fact I missed my regular Q6H dose at 6pm and took it at 8pm could make THAT much of a difference in pain and inflammation? I got very little sun exposure if any yesterday and indoor lights were mostly avoided (but not completely). I mean it was a night and day difference in pain and inflammation. What do you think? Thank you for your help. Christina |
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Aussie Barb Research Team
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Thanks Christina Experimenting and feeling the differences in adjusted and sometimes missed doses of your meds all helps to gain experience in identifying the effects of light and/ or the meds on your symptoms, and how to use and adjust your meds to achieve tolerable symptoms. Dr Marshall says: "All of those symptoms are caused by the disease, not directly by Benicar or the other antibacterial drugs. .... Your organs will be weak, that is caused by the disease. Keep reading and you will be able to isolate the symptoms and understand them more fully as part of the recovery process, not anything you should be unduly concerned with." Q: Do you think that the fact I missed my regular Q6H dose at 6pm and took it at 8pm could make THAT much of a difference in pain and inflammation? Yes it is possible, but to test it for yourself, you may like to try extending the time again. see the Information re What is a therapeutic probe? and How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours? What times should I take my Benicar? What if I forget a dose? all best, Barb ... |
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Christina Member in Phase 3
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Beni Q6H; 50mg mino QOD I am herxing in my joints pretty effectively today. I took 50mg mino at noon yesterday (Sunday). I am being much more diligent about taking the Beni on time. I hope it makes a difference and I expect to know more about that tomorrow. I'll write back when I have more to report. Christina |
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John McDonald Foundation Director
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Christina, Buy a pill timer. I would never remember to take my Benicar without mine. Radio shack has a timer with hours and minutes, and with a magnet on the back that you can stick to the fridge. john |
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Christina Member in Phase 3
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Beni Q6H; 50mg mino QOD I have been in bed for the last 30 hours or so with a 102.5 degree fever. At first I thought I was herxing but my kids were both sick with fevers as well so I think I just caught something. It's unusual for me to catch a virus...I almost always escape them but boy it's hitting hard. Also in the past when I would get sick I usually had a relief in arthritis symptoms but this time it started out as a horrible RA flare up. Maybe I am having a combination herx/sickness. Does any kind of fever kill pathogens even if it's caused by a virus? Could my flu be helping my body kill some bugs? When I have more energy I will write back. Christina PS. John, I did get a watch with a timer and that is working quite well. I was late with too many doses of Benicar and I think that was prohibiting it from working properly. |
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Christina Member in Phase 3
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Benicar - Q6H; 50mg mino QOD Yesterday and today have been pretty darn good days. I am not wonderful but I don't have any RA flaring, and really haven't had any since my fever. It seems like the last few days have been relatively consistent which is great. I took another 50mg mino dose today at noon. We'll see if it changes my symptoms. I've been much more diligent about the benicar taking it exactly on time. I think that is helping. Hangin' in there, Christina |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD This morning (my second day of QOD mino) I felt a little more pain than I have in a few days. It makes sense because I usually feel worse on the second day. Even though it is worse it still isn't bad. It seems like my "normal" is a little better. Another thing I wanted to mention is that my joints that have been affected the longest (hands, wrists, knees) seem to be more sore. The joints that have been more recently affected (hips, shoulders) feel more normal. I thought that was an interesting observation. Another difference is that the inflammation hasn't been bad at all over the last couple weeks. The pain has definitely been there but it hasn't been accompanied by that puffy, swollen feeling. When my RA started back in the beginning, my predominant feeling was puffy and swollen and a little pain. Now it's the opposite....a lot of pain but not much inflammation. I think that's interesting and I'm not really sure what that means....if anything. I'm very ready for the day I can say I have neither pain or swelling. I really believe that day is coming. Later, Christina |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD Well, it's back! Good OL RA! I am in much pain this morning which I was hoping wouldn't happen. Over the last four or five days the RA has been more consistent and manageable after my "flu" I had last week. I thought maybe that was a herx that finally got me over the hump and to the end of my 50mg dosage. But here I am again, flaring like crazy. I took my next dose of 50mg today at noon. I still have no pattern. I have been on 50mg of mino waiting for it to "level off" for over a month. Is this too long to be on 50mg mino? If the flaring never ends, how do I know when to move up to 75mg? Am I being too impatient? I'm just scared I'm going to be on 50mg forever waiting for a pattern or waiting for consistency that is never going to come. How long is too long to wait? Thanks, Christina |
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Aussie Barb Research Team
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Christina Your symptoms rising again after a month at the same dose level and a lull - may indicate that it is time to increase the dose.. You can take the 75mg as soon as you need to, to try.... and if it is too much you can take a mino 25mg or 50mg dose which will bring it back to that level again, but usually that is unnecesary. see these 2 posts, one beneath the other.. for more information: Increasing Tip and symptoms all best, Barb ... |
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Christina Member in Phase 3
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Benicar Q6H; 50mg mino QOD Hello, I spoke to Ival this evening and he had a good idea. To determine if my body needs more mino or less mino he suggested I go back to 25mg for a couple rounds to see if my symptoms cool off a bit. If that works then it may indicate that I need less mino to feel better. If it doesn't work then I will go to 75mg to see if that makes me feel better. If it does that it may indicate I need more mino to feel better. I'll be conservative and try going backward at first. I was able to level off on 25mg before moving to 50mg so maybe it will help get some control over this. I'll let you know what happens. Christina |
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Christina Member in Phase 3
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Benicar Q6H; 75mg mino QOD Here's an update: On Wednesday at noon I took 25mg mino to see if that would help cool my extreme joint pain herx. By about 5pm I was feeling better but around 8pm I started to tank. Overnight was miserable and Thursday I woke up in horrendous/intolerable joint pain. I decided to go ahead and try taking 75mg of mino because I had to do something. The rest of the day seemed to get better (although I was still really sore from the blow out). At 11:00pm I noticed feeling chilled and flu-like. My temp was 99.5. I hadn't eaten anything that day (which isn't unusual on really bad days....I'm not hungry and also fearful of food causing more symptoms). So I decided to eat a little. The fever broke and I was fine overnight and in the morning and the joint pain wasn't nearly as bad. I wouldn't call it a major relief but it was relief nonetheless. Most of today has been relatively tolerable with repspect to joint pain, but I did have some muscle fatigue and eye fatigue that was quite noticable and did keep me from doing much of anything. When I would try to piddle around the house I would begin to "black out". Everything would turn dark. I think I may have been dehydrated and hungry because after I drank a big glass of water and ate I felt better. I did take my blood pressure when I was feeling weird and it was 66/45 so that probably had something to do with it. I definitely have had strange herx-like symtoms last night and today. I am due to take another 75mg mino tomorrow at noon. I'll let ya know what happens. See ya, Christina |
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Ival Moderator
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Hi Christine You are describing real closely what happened to me at 75 mino except I never ran a fever . When I had the flu like symptoms but it would ease off on my joints I would keep everything pretty much the same. The times I would herxs and my joints were leading the way I would change up the time and the amount of mino to try to get some relief for my joints. Pay close attention to how long you get relief in a cycle so you'll have more information if you have to frequent mino dose. I noticed a big difference between 50 and 75 when I had to frequent dose. Hopefully when you take the 75 mino you will again get some relief in your joins. Food at times did cause more symptoms but it also would relieve them. What helped me the most was eating steamed vegetables. Just use whatever has worked for you in the past. After you eat if it starts to make your arthritis worse don't hesitate in an hour or two to eat a little bit again. A lot of times I notice that it would make the arthritis lightning up after a few bites of something never figure out why just glad it did. Try not to get constipated that always seem to make my arthritis worse. Keep your head up Christina it does get better. Ival |
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carol Moderator
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Christina wrote: At 11:00pm I noticed feeling chilled and flu-like. My temp was 99.5. I hadn't eaten anything that day..... Christina: Your body is working hard to kill these bacteria that are making you sick. It needs fuel to keep going! Please try to find some nourishing snacks that agree with you and try to eat a little every few hours. Lots of fluid is important, as you found out. I prefer sparkling water and drink it throughout the day. And like Ival said, keep those ol' bowels moving daily. Many find constipation a problem on the MP (I know I do) and it this can really compound your problems. Carol |
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Christina Member in Phase 3
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Benicar 40mg Q6H; 75mg mino QOD Thanks Ival and Carol for your responses. I couldn't get through this without either one of you and also John McD. Today pretty much blows as far as joint pain. I'm noticing that 50mg and 75mg are HARD! I think I have resorted to the fact that this is going to be a difficult few months. Preschool is over this week, thank goodness. I am going to clear my schedule for the entire summer and not commit myself to anything. I just never know when I'm going to feel up to doing anything these days. My joints are roached. Not only are they flaring up but they never get a chance to recover. 25mg was a cake walk compared to 50mg and 75mg so far. Although when I recently went back to 25mg it was the worst ever on the MP so I know I can't go back. I'm thinking about maybe doing more frequent doses of mino again, just to see what happens. I thought about doing 75mg one day, then 50mg the next, then 75mg the next, etc. Do you think that's too much? I've tried frequent dosing in the past with 25mg and that didn't help. I've tried lengthening the dosage also to 72 hours and that didn't seem to work either. Maybe at the higher doses I might get some anti-inflammatory effect like I did on AP. What do ya think? Thanks for all your help guys, Christina |
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John McDonald Foundation Director
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Although when I recently went back to 25mg it was the worst ever on the MP so I know I can't go back. Ival seems to have very good insights about controlling herxes but even so, stopping and starting is much like leaving a moving vehicle. You just can't step off the train while it is moving. It takes some technique and a little skill. I think the 'pragma' as we are calling it now, is that once your immune system 'sees' the microbes it keeps on killing them, like it or not. The end thereof is good, but the middle is a bit rough. |
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carol Moderator
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Christina: FWIW, when I do frequent dosing to get some relief I start with 100mg M, then do 50mg, all at 12 hours intervals. After the third dose, I feel the benefit. I know this is more than the amount officially recommended. Yes, once you start the MP you pretty much need to "hang on and ride" as best you can because it's hard to jump off! Hang in there! Carol |
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Christina Member in Phase 3
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Beni 40mg Q6H; 75mg mino QOD (with newly added 50mg on off days) I haven't posted in a while b/c I've been out of commission b/c of my joints. Monday was the worst day is months. Sunday actually was surprisingly good which I was thrilled about since we had a lot to do that day. It seems like now a pattern might be emerging on 75mg. My mino days are BAD but my off days are much better. I've decided to take 50mg on my off days to see if a little more mino will help keep the RA down for the next day. We'll see what happens with that and if it doesn't work, I'll tweak it. The last six weeks have really taken their toll on my joints. My hands are completely taxed and my knees are starting to slip around in their sockets. Once I can get through this initial phase I hope my joints will tighten back up again (they usually do). I'm thinking these higher doses might prove to be better at noticing a pattern and I might be able to have more room to adjust the dosages for some relief. I'll be working on that now. Talk to ya later, Christina |
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Aussie Barb Research Team
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Thanks Christina You are doing well in adjustiing your meds to find the dosing and schedule to suit you best.. all best, Barb ... |
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John McDonald Foundation Director
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Out of commission? Joints slipping around? Oh, Christina. I hope this eases up for you soon. john |
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Christina Member in Phase 3
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Benicar 40mg Q6H; 75mg mino QOD (with 50mg mino pulsed) UPDATE: Hello all. It seems as though my additional pulsing of 50mg on off days has helped decrease my RA symptoms. I have had some much needed relief. I am still worse than when I began MP but the level of pain is not as excruciating. I am going to hang out at this modified dose for a few more cycles then I will decrease the therapeutic 50mg mino dosage to 25mg and see if I can handle that for a week or two. Christina |
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Christina Member in Phase 3
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Benicar 40mg Q6H; 75mg mino QOD (with off day 50mg therapeutic dosing) Today I feel pretty good. I have added one Lodine a day around noon as part of my pain regimen. I do get a strange rebound effect from it but I still think it's worth it. It gives me several hours a day to get some things done. It does make me feel better for a while. The 50mg pulsing seems to work a bit as well. As long as I don't go anywhere and eat carefully I seem to feel better. I think I need to decline offers to go anywhere for a while even if I want to go. I think my system is still too fragile. Maybe later this week I will try lowering my therapeutic dose from 50mg to 25mg. Later, Christina |
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Christina Member in Phase 3
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Benicar Q6H; 75mg mino QOD Not doing well today but did relatively OK over the last week. I've been doing 75mg QOD with 50mg on Monday, 25mg on Wednesday and 25mg today (Friday) as therapeutic dosages. I still need to take a Lodine today and I hope that helps. I may skip my therapeutic dosages pretty soon so I can press on toward 100mg. I'll touch base later. Christina |
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Christina Member in Phase 3
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Benicar Q6H; 75mg mino QOD I ended up skipping my therapeutic dose of 25mg mino today (Friday), sort of accidentally. I felt horrible this morning and got a slow start today so I missed the time. I probably could have taken it late but decided to just skip it. Tonight (Friday night) I have horrible RA symptoms and a 99.3 fever. About 5pm I felt very tired, weak and sleepy. Took a short nap then the fever set in for a few hours. I'll let the herx take hold. Update ya later, Christina Last edited on Sat May 27th, 2006 06:19 by Christina |
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Christina Member in Phase 3
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Benicar 40mg Q6H; 75mg Mino QOD It's been a while since my last post. Since then (starting May 28th) I've developed abdominal cramping. I can't tell if it's a side effect of Lodine (which is a common side effect) or if it's herxing. Even when I quit taking the Lodine for a few days I still had mild cramping. I decided to try another Lodine capsule yesterday and the cramping was worse this morning but not as bad as the first time. Who knows. More time will help me figure this out. I hope I can continue the Lodine because it really helps with the pain. Other than that it's all joint pain, and pretty bad. I've had some OK days here and there but mostly bad. I'm going to hang out at 75mg QOD for a couple weeks and hope the joint pain becomes more consistent so I know when to increase to 100mg. I also haven't been diligent about avoiding sugar. I broke down the other night and had some chocolate cake and the next day I had a Payday candy bar (YUM!!) Probably not helping my cause. My son's 4th birthday is Thursday so I might fall off the wagon then but I'll be as good as I can. Until next time. Christina |
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Aussie Barb Research Team
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Christina Re cramps: apart from Lodine, see also info in this FAQ What kind of probiotics should I use? and if further exploration is required, you may wish to check if MP meds adjustments make any difference.. all best, Barb ... |
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Christina Member in Phase 3
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Benicar 40mg Q6H; 75mg mino QOD I'd have to say I've been feeling relatively good over the past five days. I wouldn't call it great but it hasn't been as extremely painful as before. I hate to write it down, but I really think I'm noticing a pattern and also noticing a bit of a "good spell" if you will. Now I know as soon as I say that I will start to tank. I am rating my pain (on a scale from 1-10) as an 8 on my Mino ON days and a 7 on my Mino OFF days. I am taking pain meds off and on as well. I also wanted to mention that my inside NoIRs are really pretty dark and I'm not able to see as easily as before. I feel like I need to remove them to do things inside the house. Could that be because my last 25D test was 12 (over a month ago) so maybe it's even lower now? I also don't notice any ill feeling when I get moments of indirect sunlight. Is it possible that I may be able to expose myself to a little more light without it hindering my progress? I'm still in Phase One so that doesn't make sense but I'm just reporting my change in experience in reference to light exposure. Any advice anypne has to share is appreciated. Christina |
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Christina Member in Phase 3
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Benicar 40mg Q6H; Mino 100mg QOD Well I finally took the 100mg mino plunge today. So far I don't feel different. Today was kind of a normal, regular arthritis day, not the interesting pain I've felt in my joints over the last couple weeks. I am no longer having abdominal cramping. It seemed like while I was having abdominal cramps my joints felt better. We'll see what happens with the new dosage. I suppose I should request a questionaire for phase 2? I expect to remain on 100mg for about a month, maybe three weeks if I'm lucky. I have been on the full MP for three months and eight days. I'm curious to see if the new 100mg dosage causes more intestinal cramping. I've not taken Lodine or ibuprofen for the last six days and I think this has helped eliminate the gastric distress. I worked out (lightly) a few days ago just to get my joints moving and to increase their range of motion. The next day was pretty painful in my joints but I could tell they were "sore" like muscles are after a good workout. I'm hoping by doing a light workout I can get more blood to flow into the joint tissues. I'll keep it light and easy. I'll keep ya posted on the 100mg. I sure wish I could attend the conference. I will be there next year, as I will feel good enough by then to travel. I can't wait. Good luck to all involved in the conference. I hope it helps to get the word out. Christina |
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Aussie Barb Research Team
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Thanks Christina You can send for the Q now so you can be reading the Phase 2 Information and making arrangements to see your Dr in preparation. see the FAQs How do I know if I'm ready for phase two? this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information to discuss with your Dr. Before starting Phase 2, we encourage Members to begin a progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing. all best, Barb ... |
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Christina Member in Phase 3
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Benicar 40mg Q6H; Mino 100mg QOD Hello all, I will now be reporting my progress on the Phase Two section of this board. I will continue to take 100mg QOD which seems to be generating a tolerable herx so far. I am excited that I am transitioning to the next phase in the protocol. I feel I am making progress and happy that phase one is almost over. I have finally learned what to expect and I know how to dampen my intolerable herxes by adding an extra dose of mino on my "off" days. My pain has changed over the last few weeks. I can't say it's really "better" but just "different". The joint pain is more sharp and breathtaking a times, but less achy and less "sick". It really is hard to explain. I've been assured I am herxing which I have to agree. Although the pain sucks, I'm glad it's different. There were many times especially in the first two months of Phase One where I was really wondering if this was working. I am pretty confident saying I believe it is doing SOMETHING at this point. I can't really move any better than I could before but things are changing and I truly believe that is a good sign. To all my MP friends in Phase One, can't wait to see you in Phase Two! Good luck to all! Christina |
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