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I’m new at this and I have been searching and asking all over the internet without any good responses. So I hope this post provides at least 1 comment from somebody with experience.
I’ve had RA for about 12 years. I’m a 46 year old man, never smoked, not overweight (actually, quite lean and slender), 12 stone, golf instructor and quite physically active.
I was diagnosed in 2004 with RA. Symptoms began long before, but I attributed it to golfing every day. My diagnosis also included carpal tunnel syndrome, verified by EMG. Both hands are affected (RA plus CT) but mostly the right.
As it began, I had quite bad pain and numbness in my hand and thumb. Especially on the right, the pain and numbness would take turns and it almost drove me mad. Holding a club made it far worse and I had to cut back on clients.
My first med was for Methotrexate which seemed to work for 2-3 years. But the symptoms worsened in late 2014. After starting Enbrel and then Humira we realized I cannot take any of those due to additional issues I have, so I stopped.
As far as the carpal tunnel, I decided to self treat it and I was quite successful (pain subsided more than 90%). Such took a good month but nonetheless I’m happy with the results (I also returned to my full time clientele). But now I’m here with the pain from RA again. Interesting note: I can actually tell this is RA pain and not carpal tunnel pain, even though they might sound similar.
After this long preamble, this is my question. They want to put me on 100mg Azathioprine. I studied it and read numerous discussions that Azathioprine will make you retain fluid. They say “don’t worry” but this is my health, my pain, my livelihood, not theirs. Fluid retention will almost certainly make the carpal tunnel syndrome come back again (just as it does for pregnant women). Thus, I do not want to risk being where I was 2 years ago. That’s unacceptable.
Does anyone have anything to offer, perhaps a similar experience?
Many thanks. Cheers
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