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Long story - anyone taking leflunomide?

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Twirly41 View Drop Down
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  Quote Twirly41 Quote  Post ReplyReply Direct Link To This Post Topic: Long story - anyone taking leflunomide?
    Posted: 21 January 2010 at 6:33pm
Hi everyone.   I'm new to these forums.   Long history here.  Diagnosed with ovarian cancer in 2007.   Had 3 operations, including a complete hysterectomy.  Am in remission now (thank God).  I had pain off and on even before being diagnosed, but the pain in my ankles started getting worse after my chemo treatments ended.  The pain quickly spread up my legs, into my back and also in my arms.  After dealing with the pain for about a year, my oncologist (who is absolutely great) sent me to see his wife who is a rheumatologist.   She diagnosed me with undifferentiated spondyloarthritis.  I've been on methotrexate, prednisone, folic acid, sulfasalazene and a couple more I can't even remember the names of.  I had bad reactions to everything.  I was at the point my only option were injections.  Unfortunately, with my history of cancer I can't get the injections because it will increase my chance of the cancer coming back.  The pain was so bad, I started experiencing severe depression.   My rheumatologist put me on Cymbalta which has helped with my depression.  She also put me on leflunomide which I've been on now for a couple of months.   Just wondering if anyone else has had any side effects taking this.   My hair is coming out which is really freaking me out.  Then on top of that I have to deal with going to the bathroom 4-5 times a day.  I'm also getting this strange rash on my arms.  Sorry for the long story but I was just wondering if anyone else has had any experience with taking leflunomide.
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janiefx1 View Drop Down
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  Quote janiefx1 Quote  Post ReplyReply Direct Link To This Post Posted: 13 February 2010 at 4:41pm
Hi Twirly, sorry to read about your problems, I just wanted to let you know that with RA, I was on Leflunomide (Arava), it really worked for me but like you, I had great hair loss, and terrible bowel troubles , to the point of being unable to go out unless there was a toilet nearby, even with time these side effects did not ease.  I have reactions to everything too and I have found the only drug I can take long term with lots of stops and starts is Methotrexate, still have side effects but they have lessened with time.  I also developed peripheral neuropathy on leflunomide (numbness in the feet and legs) and this is something they would not allow to be left to happen so I had to come off of the Arava and the neuropathy went away mostly but not completely, Arava is known for this side effect so be aware.  Best of luck, Janie.
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milly View Drop Down
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  Quote milly Quote  Post ReplyReply Direct Link To This Post Posted: 13 February 2010 at 5:18pm
The rash on your arm is not cool. Go to the doctor if you have not already done so. I see this post is from January sorry I did not notice it until today. I had a rash on my arm with arava and they took me off of it. The going to the bathroom too often is something that you can take another medicine for if it is too much of a problem. An antispasmatic should counteract that sideeffect.
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Lynn49 View Drop Down
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  Quote Lynn49 Quote  Post ReplyReply Direct Link To This Post Posted: 12 July 2010 at 6:03am
bump
Believe those who are seeking the truth. Doubt those who find it.
Andre Gide




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clarky14 View Drop Down
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  Quote clarky14 Quote  Post ReplyReply Direct Link To This Post Posted: 14 July 2010 at 7:55am
TTT
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Lynn49 View Drop Down
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  Quote Lynn49 Quote  Post ReplyReply Direct Link To This Post Posted: 04 November 2010 at 3:27am
Bumping this up
Believe those who are seeking the truth. Doubt those who find it.
Andre Gide




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