1. < Autoimmune Diseases

Rheumatoid arthritis questions

Posted by ellenh @ellenh, Aug 31, 2018

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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oldkarl | @oldkarl | Aug 31, 2018
In reply to @ellenh "Hi, Karen. Thanks for your info. Have you ever had significant symptoms or has your life..." + (show)
@ellenh

Hi, Karen. Thanks for your info. Have you ever had significant symptoms or has your life been pretty much normal since 2003? I just do not know what to expect because I feel great and am rather fearful of all of a sudden getting ill. I got terribly ill on Plaquenil with severe stomach pains and violent diarrhea. Was not able to take it. I gave it a try for 6 months but the stomach issues were crippling. But all of the DMARDs basically have the same side effects. Just checking all the bases before I "dive in" again.

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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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ellenh | @ellenh | Aug 31, 2018
In reply to @karen00 "Hey @ellenh, I’ve had no significant symptoms. Personally I’m terrified of getting lymphoma from DMARD’s. I..." + (show)
@karen00

Hey @ellenh, I’ve had no significant symptoms. Personally I’m terrified of getting lymphoma from DMARD’s. I refuse to start them. My rheumatologist has talked about them, but I shut down that conversation. No need for me to make that decision now as I’m doing ok. How about you? I’m sorry you had an awful reaction to Plaquenil! You’re not scared of side effects from biologics?

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Plaquenil 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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wottone | @wottone | Aug 31, 2018
In reply to @ellenh "Sorry you're suffering. It was my understanding that marijuana oil had no THC in it, so..." + (show)
@ellenh

Sorry you're suffering. It was my understanding that marijuana oil had no THC in it, so therefore it isn't illegal. You can order it online, can't you? Do you have any friends in other states that could send some to you? It's available here in Missouri and we're about as conservative as Texas is. I would check about the cannabis oil. I think it probably is available.

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There is weed with thc but you can also get weed with cbd which is the one that helps with pain.

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karen00 | @karen00 | Sep 1, 2018
In reply to @oldkarl "@karen00 Hi, Karen. Two things. Make sure you have a good grip on what you want..." + (show)
@oldkarl

@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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@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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larryatlarge | @larryatlarge | May 21, 2020
In reply to @johnbishop "Hello @ellenh -- Welcome to Connect. Thank you for sharing your post. It is a good..." + (show)
@johnbishop

Hello @ellenh -- Welcome to Connect. Thank you for sharing your post. It is a good thing to ask questions and learn all you can about your health condition. I don't have RA but do have polymyalgia rheumatica that is currently in remission. I found a website that may give you some additional information about the Anti-CCP Test (Anti-Cyclic Citrullinated Peptide):

-- https://www.rheumatoidarthritis.org/ra/diagnosis/anti-ccp/

There is a link on the site that has home remedies that may provide some relief:
-- https://www.rheumatoidarthritis.org/home-remedies/

@ellenh did the doctor identify any other conditions along with the anti CCP test that indicates RA? According to the anti CCP test description it is used in conjunction with several other criteria to make a diagnosis of RA. I would ask them what else makes them think RA.

John

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Why does sulfasalazine have to be taken AFTER a meal?Why not DURING a meal like all of my other RA medications?

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John, Volunteer Mentor | @johnbishop | May 21, 2020
In reply to @larryatlarge "Why does sulfasalazine have to be taken AFTER a meal?Why not DURING a meal like all..." + (show)
@larryatlarge

Why does sulfasalazine have to be taken AFTER a meal?Why not DURING a meal like all of my other RA medications?

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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?

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