Reduction of MTX | Arthritis Information

I was up to 8mg of MTX a week, going along with my 50mg of Enbrel, and my daily dose of Mobic. The Doc keeps wanting me to reduce the MTX. I am now down to 6mg of MTX and I feel my wrist are getting worse while the rest of my body is holding up. Why do the Docs want to reduce the MTX. I have actually caught my self popping Aleve which I had not done in over two years.

I also began looking for a doctor that will look into treating RA with Antibiotics. I once felt a differance while on anti-biotics. No one in the Baton Rouge, LA area that I can find will treat with anit-biotics which really sucks. I sometimes feel that these older Docs get caught up in a routine and do not want to try new things unless some pharmaceutical company buys him off. Maybe I am just venting. I don't have another appointment until June 30, cause Doc canceled the on I had scheduled for May 30 on short notice making me have to wait an extra month.

Does anyone know how to find a Doc that will use Anti-biotics or is more aggressive with attacking the RA. I want to fight this stuff, but I can not do it with out someone who wants to be aggressive.There is a place at roadback.org to request a physician who uses antibiotic protocol. You can also read people's stories on their message board.

Some people and rheums would consider antibiotic protocol/AP less aggressive, though. I think whatever works for you, is the best, aggressive or not.
Suzanne,

Is there any history of a patient getting both that you know of?

I have metioned before on the forum i went into remission for a week or two while I was sick with strep and on antibiotics. I felt bad from the strep but after wards I felt really while I was finishing off the antibiotics. I fear now that my wrist may be damaged so badly that even if I go into remission I will never fully have my strength back.

have you seen a hand therapist for the wrist? have you had an x'ray to see if it is inflammtion or damage that is causing the problem

doctors will try to get you on the lowest dose of medication that will control the disease. If your wrist is falring at the lower MTX dose then you need to call the doctor and probably go back up to the higher dose

[QUOTE=Prix560]Suzanne,

Is there any history of a patient getting both that you know of?

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We were told from the beginning that none of the traditional meds were contraindicated with AP. I've seen posts about success with adding mino to Enbrel and being able to drop Enbrel eventually.

"Infectious purists", let's say, would not want to immune suppress on AP; it goes against what they are trying to accomplish. On the other hand, the American College of Rheumatology considers minocycline a DMARD, so it seems reasonable it could replace mtx in a biologic/DMARD combo.

That's why I don't try to figure it out! Whatever works LOL!

Someone who posts on Roadback occasionally has a wife who stopped AP after trying it (maybe for a year? I can't remember.) because it was not enough to control her disease. This is the part that amazes me, makes me a 'believer'......she started Humira and it helped immediately. Great! And she takes only Humira for her RA. One med. For like three years now. Do you ever see that here? I don't.

And I found out she still occasionally takes mino for acne. Hmmm.

And she is doing so well, she sometimes forgets her Humira. Hmmm.

For like, five or six weeks. Hmmmm. Then, she feels some discomfort and goes back on it.

From my perspective, that AP failure has it pretty good. Another poster who is not responding well enough to AP is getting ready to start Enbrel. I'm so hopeful she will have the same success!
My RD is very agressive with his treatment. I have now been using Rituxan for almost one year. I've been able to stop using both MTX and Prednisone. I'm looking to retreat sometime in late July or early August......In my opinion, it really is all about finding the right med or combo of meds that works for the particular individual. [QUOTE=Lynn49]My RD is very agressive with his treatment. I have now been using Rituxan for almost one year. I've been able to stop using both MTX and Prednisone. I'm looking to retreat sometime in late July or early August......In my opinion, it really is all about finding the right med or combo of meds that works for the particular individual.[/QUOTE]

With all due respect, Lynn, hasn't it taken you 8 or 9 years to get to this point? If that is correct, having an aggressive rheum doesn't necessarily translate into an easy or quick journey. It seems it can take awhile to find the right combo for yourself, no matter what you do. I think you've posted that you give Vit D supplementation some credit, too. It's so wonderful when someone gets all the pieces of their puzzle to fit into place!
Hey Prix -

I'm one of the AP purists but I've kind of, sort of, mellowed since I got here. I think it's all infection and we want to kill the buggers as fast as possible - but many people just can't handle it. It can be a fight wrestling this to the ground and kicking it a few times. LOL

I don't know which docs are in La. but there are some fantastic ones in FLA. They're rare and you have to hunt them down which is NOT the way this should be. I couldn't find anybody near me so I ended up flying to LA to see a doc willing to consult with my not-really-into-AP-but-willing-to-try-until-I-gave-up rheumy. It worked on my 'early-onset-severe' and I'm quite happy.

Find the doc that will work with you - that's all any of us want.

Pip

I think I have been very upfront about my struggles with refractory RA on this and other boards. My path has been long and sometimes, very frustrating for a lot of reasons...I had very good results with Humira but unfortunately developed an allergy to the med after several months of use. (This happens in less than one percent of the Humira users)

Some people are lucky and find the right med or combo of meds right away. I wasn't one of those people. but I feel incredibly blessed to have a good, understanding RD and other health professionals who have all worked very hard to get me where I am today. And yes, you are right..It is wonderful when someone gets all the pieces of their puzzle to fit into place...It is my hope that everyone here has that happen, whether it's sooner of later..It makes all the difference in the world!
Lynn- I see the term here all the time but I don't know what refractory RA is. Would you mind educating me?

It is also my hope that everyone here will find all the pieces to their puzzles- I was so lucky to find mine quickly. The 2 1/2 months when nothing was working were terrifying. To hear that people go years feeling bad.....and sometimes never find the right combo...it really upsets me

Refractory RA is RA that doesn'trespond to the meds and resists ordinary methods of treatment.If you contact Road Back for AP doctor. ask for ALL doctors near you. She sometimes just gives a few but will give all if requested. If you find someone near, you might start treatment with him/her and follow up with local if AP will work with him/her.

Good luck.

Jan

I was lucky in that I was diagnosed quickly and treated aggressively from the start - and felt tons better in about 8 months. It is your body that will suffer - so I agree that you should speak up if the mtx decrease is causing issues. Hope you find the right combo quickly.i was treated very early mtx and pred esr was 98 before treatment...
esr went as low as 2 but still near all my joints were ruined in 4yrs Wouldn't refractory RA that 'doesn't respond to ordinary treatment' be most RA now-a-days? It seems like they jump straight to the big guns without starting said 'ordinary treatment'?

Pip

[QUOTE=Prix560]

I just want to be sure that we're all understanding here.. You said you had antibiotics for strep.. I've had antibiotics for strep too.. always with prednisone.. Are you certain that you weren't also RX'd w/ pred and that is what gave you the great feeling?

I'm asking because from what I've read, AP therapy takes time to work. Prednisone works almost immediately.

Thanks

Mino takes a long time to work. Up to 6 months to know for sure usually altho there are usually 'ah-ha' moments that make you realize it's working. Plaq and MTX is 3 - 4 month's right? Either way, Pred is usually a quick fix.

Hey, Babs, did you see my AP post? About melatonin?

Pip

[QUOTE=Pip!] Wouldn't refractory RA that 'doesn't respond to ordinary treatment' be most RA now-a-days? It seems like they jump straight to the big guns without starting said 'ordinary treatment'?

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No......Lynn, I'm serious. Please explain. Wasn't there supposed to be so much time on each of the DMARDS and worked thru the biologics until they used the term 'refractory'?

As to the antibiotic - when it's strep its a different antibiotics. One is a 'slash and burn' and the other inhibits a protein on the cell wall deficient microbe so it can't reproduce. One is waaaay quicker than the other but you're body can't handle all that for the time it needs to kill all the critters hanging out in your white blood cells. Your GI tract would be decimated. So, if you are one of the people that feel better on antibiotics - AP will help. And get this - if you feel worse on antibiotics and have been on a lot of immunesuppressants - AP will also work well for you. It's the 'no way either way' people who can't be guaranteed a 'quick fix'.

Pip

I'm asking because from what I've read, AP therapy takes time to work. Prednisone works almost immediately.

Thanks

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I had taken Pred at one point in the beginning but had not taken it for two years when I got sick with the strep. I don't know what antibiotic I was on but i was pretty down and out when I went to it. I actually missed a full week of work which not even RA caused me to do. After I beat the strep I felt so good that I skipped a Enbrel and MTX while I was taking the antibiotic. It was not until I was off of the antibiotic for about a week that I felt the need to start back with my meds.

Thats the rebound effect with the broad based antiobiotics. The CDB go hide in the white blood cells until the 'danger' of the antibiotics are gone. Then they come out an party again. On low dose tetracyclines, the antibiotics disable the microbes and your body does the job it's supposed to and kills them off for you. It's why most of us 'pulse' MWF - a slow game of hide and seek until your body can keep them in check. My only concern is how to get past check to checkmate.

Pip

Pip,

I just found out yesterday that I lost my left wrist to some fusion. I am hoping to get put on AP on the 30th of this month. I was doing decent on Enbrel for the past 5 1/2 years but have not been feeling so good as of late. I am trying to get in for a steroid boost today but who knows if they will give it to me. I am afraid that my doc will not put me on the AP, and my appointment with a different doc is not until 02/2009. I really feel AP will be right for me, I am currently reading the book and visit the road back website. How do you feel on AP and do you still have joint damage happening?

[QUOTE=Prix560]Suzanne,

Is there any history of a patient getting both that you know of?

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Hi, I didn't read this entire thread but I wanted to mention that it seems any time I get really sick with something my RA goes away. As soon as I start to feel better the RA comes back. I wonder if our antibodies that attack our joints leave to go fight the new sickness then return when there's nothing else for them to fight. I know I sound crazy but I was just thinking. Who knows with this crazy disease.

you are definitely not crazy. it's the exact same way with me ... i am glad to read that someone else is like me too. = )

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