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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lucy73 | @lucy73 | 4 days ago

Just my two cents worth: I am 73 and have been on methotrexate and humira for about 13 years. For quite a bit of those years I also took plaquenil. Believe me, I had the same fears of taking those meds as some of you have voiced. I had pretty severe RA symptoms, and I NEEDED relief, so I first took methotrexate, then added the others. RA does not go away, even if your pain is under control. At this point, after 13 years, I 'forget' I have RA, the meds work that well, for me, anyway. I no longer take plaquenil, and my methotrexate is at a minimal dose. And I very seldom take even Tylenol. Even though I feel perfectly normal, I would never stop taking my meds, because I know the RA is still there, and my progress could be destroyed. Untreated RA has its own, possibly life-threatening risks (heart and lung complications), so while you may be fearful of RA meds being linked to cancer, take these other risks into account. All this said, everybody is different, treatments that I needed, and worked for me, may not be the ones that work for you. However, if you've had RA diagnosed, it's not going away, but there is much hope to lead a happy and pretty long life. I know life expectancy, for RA folks, has always been lower, but with these medications, I look forward to being around for a good long time. Good luck to you!

pamper | @pamper | 4 days ago

In reply to @amarnaseer "Are you taking folic acid with methotrexate, which is recommended?" + (show)

absolutely! but its not for diarrhea prevention...

pamper | @pamper | 4 days ago

In reply to @lucy73 "Hi. Sorry to hear you're having these side effects. Hopefully, your doctor told you to take..." + (show)

thanks. yes. its to prevent nausua, mouth sores, and damage to healthy cells. and it has lessened, first dose was wicked!

pamper | @pamper | 4 days ago

wanted 2 wait 24 hrs from when took the 6 methotrexate pills sat. I have had absolutely NO diarrhea! not even loose stool, or multiple stools! here's what's diff: 1. I took it of eve like my doc's nurse suggested. (she said she used 2 take it and it did her that way till she switched 2 taking it of eve.) 2. I took the Pepto I'd been having 2 take few hrs after the methotrexate AT THE SAME TIME as metho. 3. had miniature glass of red wine, like an inch in small wine glass. (know I'm not supposed to, but...) 4. went to fam gathering with mega love and support received. One or all of those things coulda been the "ticket." OR it's wk 7, and my body just got used to it... cant celebrate my bro's b'day next sat again, but best believe will do every one of the others!