Hi Everyone,
I've been on and off these forums since my daughter, now 27, was diagnosed with ileal Crohn's. She's been on Remicade for 7 years. Since the DAY after her first infusion, she's been free of Crohn's symptoms. She is now in what they call "deep remission".
About a year ago, she started getting some skin problems in her panty line (top of inner thigh). At the beginning, there were three boils next to each other. Derm put her on Doxycline, then Bactrim. Didn't do anything. Finally we got the GI to put her on Keflex and it treated the boils, but eventually a cyst formed on the left side and we can't seem to get rid of it. We tried Keflex + Rifampin for 10 days around May and now are doing 3 weeks of Keflex + Rifampin. It seemed to keep the cyst away for about a week and then much to my chagrin, while she is on the combination, it came back.
The next thing to do is to try going off Remicade and see if it's the Remicade that's causing these skin issues. I don't want to stop Remicade because it's controlled her Crohn's symptoms so well for 7 years. She had Prometheus testing a few months ago and it showed no HACA antibodies.
So my question is: has anyone gone off Remicade and then re-started it later on? If we try another med, like Stelara, could my daughter make antibodies to Inflximab even if she has undetectable HACAs now (at the point of going off)? (meaning: if she is antibody negative when she goes off Remicade, could she BECOME antibody-positive if she doesn't see Remicade for a year or so? My fear is if Stelara or other med didn't work on her Crohn's symptoms and we wanted to go back on Remicade, would we have a problem? Anyone who can send me to a paper on PubMed they know about on this?
Anyone who went off Remicade (NOT due to intolerability or antibody formation but rather to side-effects such as this) and back on successfully, or unsuccessfully, I would love to hear from you. Thank you!
Amy (Daughter 27, ileal Crohn's disease, diagnosed May 2005, on Remicade (monotherapy) since June 2006; no other meds except curcumin, Vitamin D, folic acid, fish oil).
I've been on and off these forums since my daughter, now 27, was diagnosed with ileal Crohn's. She's been on Remicade for 7 years. Since the DAY after her first infusion, she's been free of Crohn's symptoms. She is now in what they call "deep remission".
About a year ago, she started getting some skin problems in her panty line (top of inner thigh). At the beginning, there were three boils next to each other. Derm put her on Doxycline, then Bactrim. Didn't do anything. Finally we got the GI to put her on Keflex and it treated the boils, but eventually a cyst formed on the left side and we can't seem to get rid of it. We tried Keflex + Rifampin for 10 days around May and now are doing 3 weeks of Keflex + Rifampin. It seemed to keep the cyst away for about a week and then much to my chagrin, while she is on the combination, it came back.
The next thing to do is to try going off Remicade and see if it's the Remicade that's causing these skin issues. I don't want to stop Remicade because it's controlled her Crohn's symptoms so well for 7 years. She had Prometheus testing a few months ago and it showed no HACA antibodies.
So my question is: has anyone gone off Remicade and then re-started it later on? If we try another med, like Stelara, could my daughter make antibodies to Inflximab even if she has undetectable HACAs now (at the point of going off)? (meaning: if she is antibody negative when she goes off Remicade, could she BECOME antibody-positive if she doesn't see Remicade for a year or so? My fear is if Stelara or other med didn't work on her Crohn's symptoms and we wanted to go back on Remicade, would we have a problem? Anyone who can send me to a paper on PubMed they know about on this?
Anyone who went off Remicade (NOT due to intolerability or antibody formation but rather to side-effects such as this) and back on successfully, or unsuccessfully, I would love to hear from you. Thank you!
Amy (Daughter 27, ileal Crohn's disease, diagnosed May 2005, on Remicade (monotherapy) since June 2006; no other meds except curcumin, Vitamin D, folic acid, fish oil).
