RA and Organ involvement | Arthritis Information

 

I am newer to this board and I so appreciate reading all of your feedback.  It has really helped and I hope my posts have helped as well.  One subject though, that we have not seemed to touch, is the fact that this disease can effect other organs.  Does anyone have any information on that subject and if so...do you feel that the medications you are taking have helped stop that progression?  Thanks  Susan

From what Ive heard and read...normally organ involvement occurs only in uncontrolable or untreated cases.  I know a few people who had heart and lung problems because their RA was left untreated and undiscovered many years and by the time treatment began, the damage was done.  I also know a few people who have had cases where no meds will control their RA and had organ involvement.
The flip side are treatments that cause damamge as well.  So basically ewither way, it's a crap shoot in my opinion.
Not that i'm a professional at anything...although can those of us who deal with as many docs as we do call ourselves professional patients?

I'm starting to feel like a professional patient.

I've been treated for RA for 11 years now and yes it's progressing but we (my doctors and I) feel like the medications I'm on have certainly slowed the progression. I'd hate to think where I'd be without it right now.

Lots of folks have problems with their hearts, lungs, liver and kidneys...and alot of eye involvement as well; which surprised me. Some due to the disease itself; and many because of the medications they've taken for years and years. That worries me; but my doctor claims that with the blood test that we do regularlly they pick up on problems very quickly.

There's been a number here that have had to stop taking certain medications because of elevated liver enzimnes (K, spelled VERY wrong). Hopefully those folks can share their experiences with you as well.

If it's not one things it's another, huh?

Welcome to the world of RA SusanLee...

hi susan,

i have experience with seriously elevated liver enzymes and with shortness of breath, caused by medications. MTX was the culprit in both cases. MTX was not permanently stopped for elevated liver enzymes, however it was permanently stopped for lung problems.

if liver enzymes get elevated, then all meds effecting your liver are stopped until blood results return to normal or close to normal. at this time, the meds are restarted. this happened to me 3 or 4 times. i can't remember anymore.

your liver is very forgiving. it can partially regenerate itself. if a lobe of the liver has to be removed because of injury, it can regenerate itself a new lobe. this is an awesome organ.

your lungs can't do that, so problems that show up here have to be taken care of immediately. medication is stopped and tests are run. i had no permanent effects from MTX, but i have never taken it again.

i have no regrets about taking MTX for 16yrs. it was the only drug that helped me until ENBREL. I knew about the poss bad things that taking MTX could cause and i chose to take it. anything was better than staying bedridden. it was no contest.

i hope this helps a little.

barbHey susan its all about you. theres been many times where I just wish I could get off everything hehe. But it would just be worse :( Also if a med isnt working for you, theres others. Just find the one that keeps ur RA under control and side effects that are tolerable! I couldnt handle mtx, it was horrible for me. But now im on Enbrel and seem to be doing good so far. Its your body so you should decide :) Good luck! I'mnot sure if its organ involvement or what.  I have had RA since about 1995.. then in 2000 I developed cardiomyopathy, which is autoimmune related, now also emphysema.. even without smoking... I think if one system is vulnerable to an autoimmune attack, they all are.

I totally believe that, Kathy.  In 1973 I was diagnosed with a rare autoimmune muscle disease.  Then diagnosed with Hypothyroidism.  Then ulcerative proctitis (which has been under control without meds for years) and now RA.  All are autoimmune, so I agree with your assessment that once autoimmune problems start there is a chance other parts of your body will be vunerable.  I am so sorry you have emphysema and Cardiomyopathy too.  And, so hope they are both under control.  Write me and let me know how you are doing.  You are so right...with it all...Life is still verrrry Good!  Susan
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