I am new to this board but a long time member of the breast cancer board. I have had RA for 25 years and have been under good control for the last ten years with a combo of MTX, Plaquenil and Bextra. I have had to intermittantly go off the MTX because of elevated liver enzymes. Several months ago I had to switch from Bextra to Daypro. Several weeks ago, during a "time out" from the MTX, I had an episode of coughing up blood . After CT scans, PET scans and bronchoscopy, I was diagnosed with an atypical tuberculosis called mycobacterium avium intercellular (MAI) which is a very rare form of TB, found in immunosupressed patients, usually with AIDS or cancer patients undergoing chemo. I have been collectively been treated by my rheumy, pulmonary and infectious disease docs and they agree that I probably developed this infection because of the long term use of MTX in addition to the presence of benign lung nodules which can occur from RA called rheumatoid nodules. I am now on a TB regimen that involves 3 antibiotics that I will be on for the next 12 to 18 months!
Now, here's my question: has anyone experienced this? I have never come across this before. My rheumy says this is highly unusual! The obvious consequence is now my RA is flaring because I am off the MTX and Bextra. My rheumy is concerned about switiching to other immunosupressant drugs. I am wondering what are my options? Before this TB complication, we had talked about Embrel because of my liver sensitivity to MTX. Now this may be out of the question. She will be consulting with the infectious disease doc and try to come up with a plan next week. Thanks for your help! Frayda
I am so sorry for what you are going through.I have a friend on another message board that has just finished her treatment for TB.She is doing better but of course is still dealing with.I wish I could help you more.I do know my friend is doing well now.I am sure that the dr.'s will come up with a good plan for you and you will get better soon.
Hello Frayda, just wanted to welcome you to the board. I do not have any experience with what you are going through, but I am sure some of our members will come along and share their story with you.
You have come to a very loving and supportive place, and we are glad to have you. flopsieDon't walk in front of me....I may not follow
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Hi Frayda: I just found out that I have the same thing and I never took any of the Meds. that you took. I just cough all the time and finaly buged the doctor to go to a specialist and he sent me to Daborah they operated and took off two nogels , when they cut them up they found I Had Mycobacterium Avium . Iam now on lots of Antibiotic. I don't know if you are still on here or are you cured now?
So sorry you are so poorly, I had problems with MXT and had to come off it and was put on Enbrel which is fantastic - BUT - one of the side effects of Enbrel is - guess what? TB. I have had tests for it quite recently but fortunately I am clear even though I have been on Enbrel for about six years. So, unfortunately i can't see Enbrel being an option for you, and I'm afraid i don't know much about the other antiTNF drugs.
Sorry to be bearer of bad tidings - but if it helps i am sending you loads of hugs <<<<<<<<<<<<<hugs>>>>>>>>>
Arthur ‘Whether the human and kindred animal races survive till the exhaustion or destruction of the globe … pain to all upon it, tongued or dumb, shall be kept down to a minimum by loving kindness.’
If you have latent TB (have been exposed to the bacteria and it is hiding in your body but not making you sick) then suppressing your immune system may cause it to activate and make you ill. If you are on immune suppressents and are exposed to TB you may not be able to fight the infection and so you get sick.
I didn't realise TB was not a side effect of Enbrel,I assumed it must be when my GP stressed the importance of testing for TB when on Enbrel and just assumed it must be a side effect.
Thanks for putting me straight,
Mrs Arthur Itis At least the pain lets me know I'm alive!
sjkly, I'm currently on MTX and will be starting Remicade next week. I was tested last week for TB-an injection just under the skin that was checked 2 days later. Since I tested negative for TB, do you know if it's possible to develop it later on? That is, if I'm not exposed to it from an outside source? I know you're not a doctor, but you seem to know a bit about this. Thanks. ladywriterRheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety
Hi Fradya, Now I don't have TB but do get recurrent bouts of bronchitis plus two bouts of pneumonia so do have a lung weakness and I'm allowed to take my humira with antibiotics for bronchitis but not with pneumonia. It takes me longer to recover and I generally need to be on anti biotics for longer but I'm allowed to keep going with the RA meds. So I guess it will depend on your specialists talking and deciding whats best for you. I'm also put on prednisone when I'm not allowed humira because that helps with lungs and body but I don't like it. Hope that may help, golitho