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@julieschiwal1972

Recently diagnosed with PMR that was then changed to RA. Feeling nervous about this diagnosis and wonder what I'm looking at long term. I have been reading a lot of your stories and I can relate with some of the symptoms however I'm not having fatigue or really any side effects from my medication regime. I do feel that as my prednisone is tapered I am getting some of the pain back. Every day is different. Will I be on Methotrexate for the rest of my life? and then Prednisone for flares? Will I eventually have the hand disfiguring? Is there no prevention for that? Fears galore over here! I did purchase the RA Warriors book RA unmasked...it was helpful for things to look for going forward but it really scared me. I was surprised at how much we have to advocate for ourselves. I imagined the things she talked about would be common knowledge for providers to watch for but so far I have been told to take these medications and have blood work done. No mention of CAD, Lung disease etc. Anyone else with similar stories?
Julie

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Replies to "Recently diagnosed with PMR that was then changed to RA. Feeling nervous about this diagnosis and..."

First, how old are you? Second, do you feel your inflammation is under control? Those answers will help me help you. If you' consider a biologic at any point (that's drugs like Humira and Xeljanz) don't settle for just the TB test to determine safety...also get a lung scan to rule out MAC (a non-tubercular lung infection that, like TB, worsens quickly with a suppressed immune system). Most Rheumies are completely I'll informed about it.

Julie,

I haven't had side effects from medication in 10 years. I did have fatigue, but my rheumatologist offered a stimulant, which I declined as it just masks fatigue. Then she offered a sleep aid, and I selected Lunesta, which has been very helpful to me. The rheum added in prednisone for an entire year in addition to my methotrexate of 20 mg. I now realize this was a poor choice. She had me on prednisone again for another 6 months. Prednisone is not a good drug because of the side effects of making your tissues paper thin, osteoporosis (I'm osteopenic right now), etc. I will not take it anymore. She should have put me on a biologic. Hindsight. It's a learning curve for us. You'll be on methotrexate for awhile. I'm on a low dose injection because my liver tests went up 2.5 and 3x the norm at one time. I think the injection of methotrexate is best as you get an accurate amount of drug, and it avoids the first pass on the liver (easier on the liver). Try not to go to far into the future with RA as we don't know what medications will come out or new findings that will help us. RA didn't affect my hands until the last 3 years. I don't have disfigured hands, but I notice some changes. My xrays show changes. My feet were first affected, but they don't really bother me now. Thank God. We really have to learn as much as we can to help ourselves. I am now at the point where I'm having a baseline echocardiogram, so that I'm on top of my cardiovascular health. My pulmonologist had me to do a diffusion capacity test for my lungs every 6 months to make sure the methotrexate wasn't causing any damage as well as a chest x-ray once a year. My rheumatologist told me she thought that was overkill, however, if I had damage, is it overkill then? I've had several rheumatologists, but I believe the one I have now is the best. She actually doesn't think that all biologics are the same! Of course they're not. She's concerned about safety. First time I've ever heard of that. Anyway, if I can be of help, feel free to private message me. It helps if you know someone to help guide you. One day at a time.

Arla