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 all,
I had another appointment with the doctor from Duke for the Interstitial Granulomatous Dermatitis caused by Remicade infusions. The doctor there went ahead and had my labs done at Duke including the antibody test (I think she is talking about the HACA test that determines if my body has built up human anti-chimeric antibodies to Infliximab (Remicade) and liver and kidney labs. She was a little concerned because the IGD has become slightly worse. She cut me back on the MTX since it is not helping alleviate the IGD and also cut back my prednisone to 15 mgs daily. As soon as she gets the results from the tests, she is going to call me and we'll make a decision for a treatment change. She agrees that I need to get on another biologic soon (my mobility has really gone downhill in the last 2 months. Also my BP is still high (taking 3 BP meds) and she was concerned about that, too. She assured me that we would find something that would relieve the reaction. I sure hope so. I really don't know how much more of this pain I can take. After 4 months, it is really starting to wear me down physically and mentally.
I'm leaving tomorrow to go to Tampa for a month visiting my son and daughter-in-law. I'm scheduled to see my Duke doctor again on May 3 upon my return. She is a great doc. I really do have confidence in her abilities. She sees drug reactions like IGD all the time and is in fact in a study of TNF inhibitors and Interstitial Granulomatous Dermatitis. I think I am in as good human hands as God could place me in for treatment.
Thank you all for your support. I'm posting so that there is a record in case anybody else out there develops a condition like this. Information is key for all of us.
I had another appointment with the doctor from Duke for the Interstitial Granulomatous Dermatitis caused by Remicade infusions. The doctor there went ahead and had my labs done at Duke including the antibody test (I think she is talking about the HACA test that determines if my body has built up human anti-chimeric antibodies to Infliximab (Remicade) and liver and kidney labs. She was a little concerned because the IGD has become slightly worse. She cut me back on the MTX since it is not helping alleviate the IGD and also cut back my prednisone to 15 mgs daily. As soon as she gets the results from the tests, she is going to call me and we'll make a decision for a treatment change. She agrees that I need to get on another biologic soon (my mobility has really gone downhill in the last 2 months. Also my BP is still high (taking 3 BP meds) and she was concerned about that, too. She assured me that we would find something that would relieve the reaction. I sure hope so. I really don't know how much more of this pain I can take. After 4 months, it is really starting to wear me down physically and mentally.
I'm leaving tomorrow to go to Tampa for a month visiting my son and daughter-in-law. I'm scheduled to see my Duke doctor again on May 3 upon my return. She is a great doc. I really do have confidence in her abilities. She sees drug reactions like IGD all the time and is in fact in a study of TNF inhibitors and Interstitial Granulomatous Dermatitis. I think I am in as good human hands as God could place me in for treatment.
Thank you all for your support. I'm posting so that there is a record in case anybody else out there develops a condition like this. Information is key for all of us.
I really appreciate that you posted about this. When we get scared enough about something going on, being able to come here and find out someone has "the tshirt" for that situation is super relieving.
Even if it's not what we wanted to read, just knowing someone else out there understands can release the choke hold.
Have a great time in FL. :)
Tampa is nice and of course I am enjoying my time with my son and his wife.
I,too, am very frustrated. Not as severe as you. My pain level is good right now. The 7 shots of enbrel did manage the pain very well. I just could not endure the sinusitis/sinus infections from it. Rheumy suggested Simponi next. I am going to try it his way since enbrel as a tnf blocker did help with pain. Simponi is once a month so hopefully my sinuses will not be affected too much.
Some of the problem is that I have had the upper respiratory virus (crud as you call it) twice this winter and have been on anti-biotics 3-4 times. Weird thing is that while I was on anti-biotics my RA was not around, even knuckles way down. Weird! Makes me wonder about taking minocycline anti-biotic for RA. They say RA comes from your gut! Or it could be the enbrel really kicked in.
It has been 5 weeks since last shot of enbrel and I am starting to ache slowly. I had to wait because I had to get more anti-biotics for UTI, that's another story. But Sunday, it's shot day.
I really hope that all your suffering can finally bring you to great results that will help treat the RA. That prednisone is horrible stuff. It does more damage to our bodies than helps after awhile. Just keep this thought in your mind that when they put you on the right medicine and you can taper off prednisone you will feel like your old self again.BP will go down, weight and mood way up.
Good Luck to you. Enjoy Florida for me.