My RA story

My journey with RA started about 25 yrs ago. I had been diagnosed with fibromyalgia a couple years before, so at first I just thought it was getting worse. Not the case! Numerous tests determined that I had RA. My grandmother had it, and she was very deformed, so at first I was very afraid of what was to come, then my family physician who was very informed about RA started me on Celebrex and Plaquinol and got me an appointment with a rheumatologist. The Celebrex was a lifesaver. The Plaquinol took quite a while to kick in, but finally did ( 3 months). I was relatively pain free for just over 17 years.

First the Celebrex started kicking my kidneys down, so I had to stop taking that. A couple months later a yearly eye exam showed abnormalities in my eyes, so I then had to stop the Plaquinol. From that point til the present has been like a bad, bad dream. The pain is so hard to describe to anyone that does not have RA. Even with pain killers life got really hard. There were many days I couldn’t even get out of bed after 6 months without Celebrex my kidneys were starting to improve, so I made the conscious decision to go back on it part time. Life was better, but nowhere near normal. I was put on painkillers and trying different RA meds. Finally was put on methetrixate in pill form. Took 3 to 4 months, but finally started feeling a little better, but still not good. Next came Methotrexate injection. A bit more progress, but still a gap between decent days and bad days. I can tell when the mtx is wearing off. This has been a 5 yr journey! The next step I’m told will be the biologics. I have taken the last 6 months deciding whether I want that step. With the painkillers, I am functioning fairly decently. Not able to go back to work, but at my age (60), I am not going to worry about that. Anyhow, now I am looking at Xeljanz. Waiting for an appointment with a new rheumatologist. I hope he can also help me with something more with the nerve pain that started as my hands and feet started to deform. I am on Lyrica 150 four times per day as well as Tylenol4 w codeine four times per day.

My journey has been 5 years of pain and disableing changes, but I will NOT give up!! I am very lucky to have a very loving, helpful, and understating husband (40 yrs). Without him I would probably not be able to keep my spirits up! He takes wonderful care of me. We travel to a warmer climate for the winter and I know I couldn’t do that on my own. So instead of being able to dwell on what’s wrong with me I prefer to take it as just another challenge in life.

Staying in bed hurting doesn’t get anything done, and in fact I think the pain feels worse! Getting busy or going outside for a while helps take my mind off the pain.
This is my journey so far. I’m thankful I had those 17 years when I was almost normal. The last 5 years have been hard, but the next 5 yrs and the next after that are going to be better because I won’t let it be any other way!

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