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 am currently waiting on test results from G6PD labs to see if I can start taking Dapsone for the 6 month old blistering skin reaction I have had to all tnf inhibitors. I'm going to admit that I am frightened to try the Dapsone but Prednisone and Clobetasol are not making it go away. In fact, this past Tuesday I experienced the most painful day yet with the lesions on my hands. I'm scared of the new med because I have such bad reactions to drugs but I have to keep trying because (trust me) no one would wish this painful mess on their worst enemy.
My doctor at Duke told me I am in for a long time with this. My response was that I had already figured that out when it reached the 3 month mark and it is now 6 months. I do like her very much. She is very good with explanations etc. and really does seem to know her stuff.
As soon as I get permission to start the Dapsone and see how it is affecting everything (kidneys, liver, and allergic reaction), I will endeavor to try another biologic (not a tnf). I have Orencia, Actemera, and Rituxin left to try. Also, I am off of MTX (could not start the new drug if taking MTX).
My joints are hurting and I am so stiff that I move like Frankenstein. I definitely will be trying another RA med.
I am so weary of all this. Because of the pain in my hands, I cannot tell you the last time I was able to put a good cleaning on my house. My son has been really good about trying to help out.
Please remember me in your prayers. I sometimes think that prayer is the only thing keeping me going.
Thanks//Frances
I am currently waiting on test results from G6PD labs to see if I can start taking Dapsone for the 6 month old blistering skin reaction I have had to all tnf inhibitors. I'm going to admit that I am frightened to try the Dapsone but Prednisone and Clobetasol are not making it go away. In fact, this past Tuesday I experienced the most painful day yet with the lesions on my hands. I'm scared of the new med because I have such bad reactions to drugs but I have to keep trying because (trust me) no one would wish this painful mess on their worst enemy.
My doctor at Duke told me I am in for a long time with this. My response was that I had already figured that out when it reached the 3 month mark and it is now 6 months. I do like her very much. She is very good with explanations etc. and really does seem to know her stuff.
As soon as I get permission to start the Dapsone and see how it is affecting everything (kidneys, liver, and allergic reaction), I will endeavor to try another biologic (not a tnf). I have Orencia, Actemera, and Rituxin left to try. Also, I am off of MTX (could not start the new drug if taking MTX).
My joints are hurting and I am so stiff that I move like Frankenstein. I definitely will be trying another RA med.
I am so weary of all this. Because of the pain in my hands, I cannot tell you the last time I was able to put a good cleaning on my house. My son has been really good about trying to help out.
Please remember me in your prayers. I sometimes think that prayer is the only thing keeping me going.
Thanks//Frances
To all of you, thank you so much for your support and your prayers. Please know that you are also in my prayers.
My rheumy wants to try remicade but including your story I have heard too many horror stories of side effects. His infusion nurse said one lady had her bp go up and then had to go to hospital. And a few people have had serious rash reactions. I would probably get both.
This is what I am trying. I am going to a doctor in Winston-Salem who is an integrative doctor. He believes that the RA is caused by allergies to food. This causes you to have that leaky gut that causes bacteria to overwhelm your body. It is the same theory as the website roadback.org.
Dr. Lantelme has me taking a natural form of antibiotic and lots, lots of natural supplements. Mostly vitamins and several for inflammation.He also has done allergy,hormones and nutritional bloodwork.
The supplements he has me taking comes to only about $41 for one month from the website Swanson Vitamins.
I know this may be a long shot but ever since my RA was gone while I was on antibiotics for 30 days for sinusitis/infections, I have considered taking this route.
Right now I am okay. I feel a lot better mentally and have a lot more energy. My aches are not too bad but are not gone. My CRP is 7.5 now. And I am on 5mg prednisone.
There has to be another way to deal with this. I will hear back from allergy test by end of May. I can almost guarantee that I am allergic to dairy so I have cut that out.
Along with supplements I take a probiotic and so far my stomach is doing fine.I may have to go back to conventional RA medicine but have decided to give this a try.
I wish you good luck. I can't begin to comprehend having to endure what you have had to. Please keep us advised as which way you choose to go and how you do.
I haven't done much research into the antibiotic treatment of RA since I am allergic to so many antibiotics but I am interested in your progress. Please keep us informed. You never know what path each of us may find it necessary to follow.
Hugs, Frances