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Rheumatoid arthritis questions
I had a little stiffness in my fingers in the morning. Nothing else, no pain. My doctor took an ANA which was strongly positive and sent me to a rheumatologist who did an anti-CCP. It was over 200. From this she told me I had RA and put me on hydroxychloroquine which made me sick and I discontinued it. Just saw her again six months later, no symptoms. She repeated tests and anti-CCP was higher than before. She wants me to start sulfasalazine. My question is, has anyone been diagnosed with RA who has never been in an active stage, and how imperative is it that you take a DMARD? The meds make me far sicker than the disease so far. I understand why it is recommended - to keep the disease from progressing - but so far I have no signs of RA. Is that even possible??
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@karen00 Hi, Karen. Two things. Make sure you have a good grip on what you want your life to be. Then, with that clear, go for it, keeping in mind that you have some extra stuff to deal with. It is like having blonde hair, or green eyes. It is just stuff about you that you cannot ignore, but you can and must account for it sometimes. Do not worry about having it, just deal with it. Except for the extra pain and stiffness limitations it has no more necessary effect than a pimple on your shoulder.
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1 ReactionPlaquenil is a DMARD. The biologics, I believe, are the ones that are concerning for lymphoma. I think DMARDs actually slow down the chance of lymphoma. But yes, I hate the idea of taking drugs for a disease that I don't feel I have. I asked my rheumatologist what the repercussions of not taking a DMARD now were and she said they were "significant." The purpose of the DMARD is to prevent damage to joints and the progression of the disease. So, she wants me to start before I start having symptoms. It's just a hard pill to swallow, so to speak.
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1 ReactionThere is weed with thc but you can also get weed with cbd which is the one that helps with pain.
@oldkarl, thanks so much for your thoughtful reply. I have recently moved and can’t see a new rheumatologist for 3 months. You have made me think that I need to talk about progression and maybe it’s time for something different. However, I understand that biologics have the possible side effect of cancer and that makes me run! I am terrified of it! All in all, it might be better for me to stay with what I’m taking now!
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1 ReactionWhy does sulfasalazine have to be taken AFTER a meal?Why not DURING a meal like all of my other RA medications?
Hello @larryatlarge, Welcome to Mayo Clinic Connect. Mayo Clinic has some specific information for taking sulfasalazine for RA along with other conditions here: https://www.mayoclinic.org/drugs-supplements/sulfasalazine-oral-route/proper-use/drg-20066179
The rheumatoid arthritis second doesn't specify taking it after a meal but the introduction information does say "Take this medicine exactly as directed by your doctor." Have you asked your doctor this question?
My sister-in-law’s Rheumatoid Arthritis is getting worse. Is there a discussion group for RA?
Thank you.
Eileen
Yes, it's under autoimmune diseases https://connect.mayoclinic.org/group/autoimmune-diseases/
is this where I need 2 b if have ra? don't see support group just 4 arthritis...
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1 ReactionRheumatoid arthritis was the chief cause of our older sister's death in August of 2020. Susan was barely 64 years old when she died of a massive infection around her spine brought on by her RA medication.
I can't remember the name of the medication that she took for over a decade, I only know she had to inject herself once a week IIRC, and that it had to be refrigerated. It slowly destroyed her immune system, and somehow she developed an infection that spread along her spinal column and began to grow. It started as back pain, until she couldn't move due to the pain.
She spent a month in 2 hospitals before they realized what had happened. Surgery wasn't an option. She ended up having a stroke from a blood clot in her brain that effectively killed her. My brother in law broke the terrible news to my wife and I after telling their kids first, then he told my 2 other sisters.
Susan was still breathing, but she was gone, which meant that he had to pull the plug, but he chose to wait a day to do so because this all happened on their daughter's birthday. Not a good day to remember your mom's death.
When this garbage was all over, we were talking with her husband about what had happened, and he told us something we didn't know. Susan's doctor's told her that they could treat her RA, but that it might come at the expense of living a shorter life. The drugs used to treat it may damage the immune system over long periods of time, and she needed to make a decision about what she wanted to do. So she and Tom talked about it, and she chose to accept the treatment option rather than deal with the condition on her own.
I wish she had told us this, when she went into that hospital in July of 2020, we never saw or heard from her again.