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Wednesday, November, 25, 2009
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The BIG Decision

TamMae
TamMae
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TamMae is recovering from overdoing it yesterday. Plan B day
Married, living with RA for many years.

I am 41 years old, and have been married for 15 years. I've had RA...

TamMae

Thursday, April 23, 2009
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So, thanks to happening upon this site last night in my quest for more info on the TNF-inhibitors, I have made my decision.  Next week when I go to my rheumy, I'm going to ask for Enbrel.  He's probably going to pass out.  Seriously, though, I am going to present my reasoning thus far, (feedback will be appreciated). When I was diagnosed in 1982/3 the treatment was aspirin, steroids and propoxyphene (Darvocet)  and this is what I was put on.  They didn't start you on DMARDs unless you were VERY advanced.  I never tested positive for Rhematoid Factor.  My parents, upon researching these meds, decided to take me to Dr, Thomas McPhereson Brown in Arlington, VA.  His unorthodox treatment was to get me off steroids, and treated RA with minocycline.  I feel that this doctor saved my life, since I have met people my own age who stayed on the steroid treatment through their teen years, and still need to be bathed and dressed by their parents.  After he died, I have been in what seems to be a perpetual search for a rheumatologist who CARES/LISTENS.  They are very rare.  I have become my own expert.  After having to get both hips replaced in '89 at the age of 21, I now had to be extra careful about infections of any sort.  Tried all the DMARDs.  Some worked fairly well, still had wicked flares, though, and in '94, '96 had to have the hips replaced agian.  Had terrible side effects with some of the DMARDs.  Almost lung infections being the deal breaker.  There has pretty much been a surgery every 2 to 3 years since 1989, so when the TNF-inhibitors came out with a bang about 8 or 9 years ago, I was in the midst of joint replacements, and since they were new, and since infection is one of the  buzz-words associated with them, I reason that A) This disease has run its course through my body, so, there are no joints that I would be protecting from damage. B) What if you take it, and get a mother infection and have to have one or more of the artificial joints taken out (worse-case scenario, I know, but see above 1989)?  Would taking the drug be worth it at this point? and finally C) Why not see if these drugs stick around a while and see what effect they have on others, before you jump in?  So earlier this year I went to a pain clinic and asked to be put on STRONG pain meds, and they kindly obliged.  Now, as I wrote before, I feel as close to "normal" as I ever have.  With this newfound energy, I have begun to wonder if I shouldn't try the TNF-inhibitor, just to see if its worth the risk to protect my ankles (the only weight bearing joints I have left that are MINE).  And if it happens to make it so I don't have to take the Kadian, MORE BETTER!  But I HAVE to stress, If any of you are in horrible pain and nothing seems to be working, PLEASE try a pain clinic.  Opioids are VERY safe IF you use them as prescribed and don't go crazy and try to climb a mountain, once you get adjusted to them. If you take them for legitimate, chronic pain, they don't make you spaced out, or high, or wacky. They really do just mask the pain, but sometimes thats all one can do with this disease, and they can help you keep moving.  When you stop moving, you are only inches away from not being able to move, and that is the scariest thing of all.

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