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John McDonald
Foundation Director
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Posted: Sat Mar 18th, 2006 04:18 |
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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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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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carol
Moderator
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Posted: Sat Mar 18th, 2006 05:54 |
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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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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Christina
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Posted: Tue Mar 21st, 2006 02:28 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Tue Mar 21st, 2006 19:49 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Wed Mar 22nd, 2006 17:55 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Wed Mar 22nd, 2006 19:36 |
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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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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: Thu Mar 23rd, 2006 04:48 |
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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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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Ival
Moderator
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Posted: Thu Mar 23rd, 2006 17:38 |
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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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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: Sat Mar 25th, 2006 19:29 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Mon Mar 27th, 2006 23:33 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Mon Mar 27th, 2006 23:41 |
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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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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 Mar 30th, 2006 03:14 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Fri Mar 31st, 2006 04:23 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Sat Apr 1st, 2006 21:31 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Sat Apr 1st, 2006 22:01 |
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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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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: Tue Apr 4th, 2006 00:06 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Tue Apr 4th, 2006 00:12 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Ival
Moderator
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Posted: Tue Apr 4th, 2006 00:25 |
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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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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: Wed Apr 5th, 2006 19:27 |
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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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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Wed Apr 5th, 2006 19:38 |
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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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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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