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carol
Moderator
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Posted: Wed Apr 5th, 2006 22:36 |
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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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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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Aussie Barb
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Posted: Wed Apr 5th, 2006 23:50 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Christina
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Posted: Thu Apr 6th, 2006 00:43 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Ival
Moderator
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Posted: Thu Apr 6th, 2006 02:09 |
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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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MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 47
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Christina
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Posted: Thu Apr 6th, 2006 22:50 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Thu Apr 6th, 2006 23:33 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Christina
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Posted: Sat Apr 8th, 2006 22:27 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Sat Apr 8th, 2006 23:03 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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carol
Moderator
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Posted: Sun Apr 9th, 2006 01:01 |
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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
____________________
rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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Christina
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Posted: Wed Apr 12th, 2006 03:31 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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carol
Moderator
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Posted: Wed Apr 12th, 2006 03:56 |
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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
____________________
rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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Christina
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Posted: Thu Apr 13th, 2006 06:37 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Thu Apr 13th, 2006 17:47 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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jrfoutin
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Posted: Thu Apr 13th, 2006 18:13 |
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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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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Christina
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Posted: Fri Apr 14th, 2006 07:06 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Fri Apr 14th, 2006 16:30 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Christina
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Posted: Fri Apr 14th, 2006 21:19 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Sun Apr 16th, 2006 06:29 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Posted: Sun Apr 16th, 2006 06:48 |
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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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Posted: Sun Apr 16th, 2006 17:32 |
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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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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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