Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hey DS friends,
I saw the Duke expert today for the painful rash on my hands and feet that have been with me since Thanksgiving. I must say this doctor really seems to know her stuff. She says it is Interstitial Granulatomous Dermatitis from the TNF-a inhibitor, Remicade. She'll be working closely with my local dermo and my rheumatologist spearhearing my treatment plan for this. They plan to test to see if I have developed antibodies to the Remicade or if it is all tnf-a inhibitors.
Treatment at the present time will consist of increasing my methotrexate, slowly over the next few months tapering me down on the prednisone (going to 17.5 mgs daily for the next month) and continuing with the Clobetasol. Depending on what the antibody test shows, I will probably go back on some biologic after a while (it may or not be a tnf-a inhibitor). This particular doctor is conducting studies in the field of interstitial granulatomous dermatitis from tnf-a inhibitors. I feel encouraged at last that someday this mess may disappear. It apparently takes a long time for the Remicade to completely clear out.
Note: This is a rare reaction to the biologic. The drug is wonderful for some people. Then you have the few like me who unfortunately have problems. I'm posting all this in case someone else runs into this same reaction some day.
Thank you, Lord, for leading me to this doctor today.
I saw the Duke expert today for the painful rash on my hands and feet that have been with me since Thanksgiving. I must say this doctor really seems to know her stuff. She says it is Interstitial Granulatomous Dermatitis from the TNF-a inhibitor, Remicade. She'll be working closely with my local dermo and my rheumatologist spearhearing my treatment plan for this. They plan to test to see if I have developed antibodies to the Remicade or if it is all tnf-a inhibitors.
Treatment at the present time will consist of increasing my methotrexate, slowly over the next few months tapering me down on the prednisone (going to 17.5 mgs daily for the next month) and continuing with the Clobetasol. Depending on what the antibody test shows, I will probably go back on some biologic after a while (it may or not be a tnf-a inhibitor). This particular doctor is conducting studies in the field of interstitial granulatomous dermatitis from tnf-a inhibitors. I feel encouraged at last that someday this mess may disappear. It apparently takes a long time for the Remicade to completely clear out.
Note: This is a rare reaction to the biologic. The drug is wonderful for some people. Then you have the few like me who unfortunately have problems. I'm posting all this in case someone else runs into this same reaction some day.
Thank you, Lord, for leading me to this doctor today.
I need to add this to the list of things to research when I am on Spring Break in two weeks.
The more I learn about autoimmune conditions, the more I want to specialize in immunology when I graduate. The science behind it intrigues me.
Of course, I also have a vested interest in learning as much as I can! ;)
I hope that they get you on the right track and STAT!
Thank you for sharing. If and when I have to go on remicade, I can refer back to your post if need to. Here's hoping they can find a cure for your rash and a medical plan to help your RA. You have had that rash a long time!
Keep us updated on your progress and which biologic you start.
I also had a rare reaction to Remicade (and by extension, other TNF inhibitors), that first manifested itself as a full-body rash, as well as bone marrow suppression. The rash from Remicade was short-lived, but much later, after I had begun Rituxan treatments, I developed another rash. I stopped all medications, giving myself enough time to let Rituxan clear my body, but the rash has persisted for 3 years, also managed with clobetasol. I know the condition (spongyatic dermatitis), but no one has ever been able to give me a reasonable explanation for cause. My gut hunch is that something was changed by the Remicade, and continues.
I wish you all the best in getting past this completely.