Tuberculosis diagnosis after treatment with Remicade

[jarogers]

I was diagnosed with Crohn's disease in 1992 after a bowel perforation requiring a colon resection...I have colon and small bowel involvement. I have taken many of the usual meds: Pentasa, Asacol, Imuran, Entocort, Remicade, and of course multiple rounds of Prednisone through the years. In 2003 I obstructed again requiring my second resection and again had small and large bowel disease. While in the hospital post-op I spiked a temperature 3 days after surgery and had a work-up for infection. I had an abnormal chest X-ray and A pulmonologist became involved as well as an Infectious Disease doctor and I was finally diagnosed with TB several days later. I had been asymptomatic...I had been on Remicade for more than 2 years getting regular TB skin test annually that all remained negative. My immune system was so suppressed from the meds the test did not react. I took 18 months of treatment for the TB with no evidence of active disease but now I can't take most medications for the CD and I had recurrent CD in 2008 and continue to flare. I have been on Pentasa with no symptom improvement since my CD initially recurred. I have had constant pain and nausea with diarrhea up to 20 times a day despite multiple rounds of Prednisone since Feb and I started Methotrexate in September. I have not tolerated the Merhotrexate having bad side effects including terrible mouth ulcers after each injection, shingles, and an URI. I have decided I am not going to continue the Methotrexate. I see a local GI doctor that I have seen for 14 years and he is wonderful but all of my local doctors (and me) fear a recurrence of the TB with too much immunosuppression so he has sent me to a Crohn's specialist at Emory Medical Center and I see her again this week and will have to talk about other options. I have been unable to work since Feb and am on LTD and now having to apply for Social Security Disability. I have had this disease for 20 years and despite having active disease most of that time I have always worked but have had to accept I can't work at this time due to the severity of my disease at present and my limited options of treatment. Is there anyone who has also had TB related to treatment with Remicade and if so how is your doctor treating your disease now? I would so appreciate any help.

 

[Solicitous Spirit]

I'm afraid I can't help as such, but I can share in your experience, albeit it is early days yet. I have been on Infliximab for Crohn's for approximately 12 years and have just gotten diagnosed with TB, so have been taken off it for the duration of the treatment which they have told me will be 12 months, minimum. Fingers crossed that all goes to plan with that treatment and that my Crohn's doesn't flare up in the meantime...

 

[Miss Underestimated]

So sorry this happened to you.

 

[Solicitous Spirit]

No dramas! You've gotta roll with the punches, I say. No point worrying about what hasn't happened and could potentially happen - right now, I'm just dealing with adjusting to the meds I'm on for TB (which takes me back to the days when I was swallowing a handful of tablets for the Crohn's!) and making sure they don't make me feel as bad as they could (which is difficult - nausea and fatigue are my friends...). Thanks for the thoughts though!

 

[aumtb]

I had one of the early treatments with Remicade. Just after three doses I had a lymph node issue. After some antibiotics and stopping remicade I continued to take the common treatments for UC CD.

It is possible that you were not treated for the correct condition. It is possible that the unsafe conditions in the hospital lead to the tb.

If they treated you with 3 or 4 good TB drugs, did any of your CD/UC symptoms improve?

 

[jarogers]

I was diagnosed with Crohn's in 1992 and my colon perforated just after diagnosis so I was treated for the right condition without question. I had about 3 good years after my first surgery symptom-free then had a flare and had to take meds since that time. The Remicade was helping until about 6 months prior to my last surgery and diagnosis of TB. I could have been exposed to the TB in many places...I went to Kenya 6 months prior to diagnosis, obviously I could have been exposed in the hospital while working, or just out in public. Regardless of what my exposure was and when my exposure was the fact that I had been on Remicade for so many years with a weakened immune system is what caused the TB to be so bad. My symptoms were much better during the time I took the TB meds, which was 18 months but I had just had surgery so I had several years with no symptoms but now am pretty sick all of the time and have been on Prednisone for about 2 years and we have been unable to taper off. I tried Methotrexate and had terrible reactions with it lowering my WBC and had 2 ear infections as well as my mouth would be full of ulcers with each dose. We are very limited as to what I can be treated with given the history of TB...I now have Restrictive Airway disease as well because of the nodules in my lungs and I am on Oxygen all of the time. I thank God for all of my good days and for my wonderful husband and son.

 

[aumtb]

History of TB? It shouldn't matter at all after you have been properly treated.