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Diagnosed but not sure

Last year, I woke up one morning and realized my hands were swollen and painful. My primary doctor ran some labs and my RA factor came back slightly elevated at 18. I was referred to rheumatology. A year later and multiple lab tests later, my RA remains slightly elevated, now in the 20s. My ANA, ESR, CCP, and CRP are all negative. My rheumatologist still thinks I have RA despite this. I'm really hesitant to take the drugs as I'm very scared of the side effects. I'm even more hesitant because I'm not confident in the diagnosis of RA because my labs are negative. My dr diagnosed me based on the following symptoms: family history (parent and sibling) of autoimmune diseases, morning weakness/stiffness, very weak grip, especially in the mornings. Finger pain in both hands. Extreme fatigue some/most days. I have chronic microcytic anemia, Reynauds, dry eyes, and neck/shoulder pain. I keep reading stories from people who have RA and they way they describe their pain is not how I describe mine. My pain is manageable, my finger pain is more "throbbing" in nature and I have no swollen joints. My hand grip definitely feels weak though, and it's difficult for me to make a tight fist, especially in the morning.

I don't take any medication at this time. I do have pain throughout the day but it doesn't debilitate me in any way. I have no nodules or any physical characteristics of RA.

I've been prescribed plaquenil. Should I wait until the disease progresses more before I take it? My doctor thinks I should start it now before it progresses, but I worry that I may not have RA and may do more damage to my body if it's a wrong diagnosis. Again, the pain is not that bad and manageable. The initial swelling I had last year lasted about a week and then went away, never came back.

Does anyone have a story like mine? Who has taken plaquenil and what kind of side effects do you have? My dose is only 200mg once a day. I'm 35 and thin. Thanks!

  1. Hi notjustyet and welcome! If you have any doubts about your diagnosis, you may want to seek a second opinion. It's ok to advocate for your health in the way you see fit. While you may doubt a diagnosis of RA, there is obviously something going on in your body that requires attention and treatment. I will say that it is highly recommended to seek early treatment for RA symptoms, to help slow the progression of the disease. However, I know that the side effects of many of the medications to treat RA can be daunting, to say the least. Here is a list of some of the early symptoms of RA -- You can also discuss your concerns with your doctor, if you haven't already. One reason early treatment is advocated is also to prevent/slow damage to the joints, which is very important. As far as side effects of plaquenil (hydroxychloroquine) your doctor should monitor you for any potential serious ones. Here is some information on the medication that you might find helpful --

    Also, here is my favorite piece for the newly diagnosed that may offer you some insight and hope -- Whatever you choose to do, we here at wish you the best of luck! Please let us know if you have further questions or concerns. We are happy to help in any way we can. Best, Erin, Team Member.

    1. Hi Notjustyet, you sound just like me, although I am much older. I had and have very similar symptoms, and also close relatives with autoimmune disorders (psoriatic arthritis and crones). I was prescribed Plaquenil 3 years ago, but did not take it regularly for the first 2 years because it was and still is hard to believe I have RA. I decided to get serious about it because the generalized fatigue and body pain were really beginning to affect my quality of life, my pleasure in work and relationships, and I figured any side effects couldn't be worse than what I was feeling. I put the bottle of medication on my bedside table and started taking it every night, and a month later, I could feel the difference. I thought the medication was just to keep things from getting worse, but I feel tremendously better a year later. No more painful feet and hands when it is cold outside, no more shuffling when getting up in the mornings, no more fear of handshakes or hugs. I still have symptoms and hard days, but the medication is making those symptoms and hard days fewer and far between. I feel very fortunate that things are not worse, and am working hard to make sure they do not progress. Best of luck in your journey.

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