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Need drug to suppress RA that does not flare up my BE or MAI.
Have BE and MAI, both stable, for 2 years. No major flare up with Mullein,NAC and vest. 2 months ago RA appears, on steroids for 1 month, works great as short term fix. Ra Doctor trying to give me drug to suppress RA without activating my BE and MAI. Taking supplements to help inflammation, off of steroids on 9/15. Any suggestions so pain does not return, 79 in good health. Good diet, no meat only fish, Zumba,walk. Thank you, have learned so much from this site.
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@playadelcarmen Interesting question...I have had RA for years, but no rheumatologist would treat it because my bloodwork didn't show it - only my joints. This year I was referred to a new doc by my pulmonologist because she believed it - said there are quite a few well-documented links between other inflammatory disorders and Bronchiectasis.
The new rheumatologist is VERY knowledgeable about sero-negative arthritis, and started me on prednisone to stop a huge flare (hands took 20 minutes to work by the AM.) Then he studied the meds in his arsenal, and has started me on Arava (leflunomide.) Like other disease-modifying anti-rheumatoid drugs it has a very long list of side effects. But, according to him, his BE and asthma patients have pretty good results with it, and it seems to cause less lung issues than others. I'm sure his thoroughness and caution about other conditions is why my pulmonologist prefers him.
I am going into month 2 of Arava (it takes about 3 months to work) and tapering off prednisone. So far, so good - I can use my hands again.
This is NOT a recommendation for you to ask for this med - it is a suggestion that you find a doc who will study your needs and the available meds to find what is right for you.
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2 ReactionsSo great to read this today! Thank you. My RA shows up in my hands with that level of pain too. I've been on Arava for a few years now
I was diagnosed with BE and MAC last year and am receiving tx (big 3 & Armikayce) I'm waiting to visit NJH later this year. I had read other places how bad it is to continue with any RA meditation with MAC. My pulmonologist/ID who is well trained with this said he didn't see that an issue. I was so relieved I couldn't go back to that level of pain and have any quality of life. Great to hear your story! Wishing you all the best.
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1 ReactionI have MIA, BE, and COPD. I also have RA, Raynaud's, and Scleroderma. My RA is also in my hands. I refused drugs for several years. I finally gave in and was on Sulfasalazine for 8 months. That was the worst decision of my life with lung diseases. I had an unbelievable exacerbation of BE, on steroids for approximately 10 days, then on an IV-PICC line for 9 weeks. I had an allergic reaction to the first IV medication, then changed to a new medication to finish out the treatment. Of course, my ID doctor immediately took me off the RA meds.
My RA doctor did not think the RA meds caused the exacerbation. He is so wrong!!! Overall, my BE has been much worse since I was on Sulfasalazine. I was doing one AWC daily, now I have to do two, and still produce a ton of mucus throughout the entire day. There may come a time when I have to treat my RA, but I hope there will be an available drug that does not have such a negative impact on our lungs. I know many lung patients have NO choice and must take RA meds. I feel for them because the effect of the RA drugs is never good for our lungs.
Thankfully, for now, I can deal with my RA, so I choose to do all I can to protect my lungs from any negative exposure.
Good luck to all NTM and RA patients. I know it is a hard road to travel.
Take care and stay safe.
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2 ReactionsHi
I also have had Ra for the last 30 years.
When I was put on humira way back and it lower my immune system and I got brochectasis along with a pseudomonas. I could not use immune lowering drugs after that. I was put on minocycline 2 x day Mon Wed and Fri along with hydroxychloroquine 300 mg a day. I was switched from minocycline to doxycycline 5 years ago due to some hyperpigmentation of my skin. My Ra has been in remission since, about 20 years now. I first found out about using this protocol from from a group called The Road Back. My rheumatologist has no problem prescribing it. It does take a few months to see good results.
Has anyone heard if the new device approved in July called the Set Point System. It’s an implanted device that sends electrical impulses to the vagus nerve. Not sure how it works but will ask my rheumatologist.
you have been taking the doxy and hydroxy for 20 years? Has the doxy had any effect on your Pseudo or do you still have it?