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Rheumatoid Arthritis
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Posted 10/25/2008 5:24 PM (GMT 0)
I'm 49, have had RA for almost 2 years, and have had some bad experiences with different meds.  (HAVEN'T WE ALL?!?!?!) I took methotrexate and developed pulmonary fibrosis (they think) from that.  Has anyone had that experience?  I see a pulmonologist every 3 months-she put me on a prednisone burst (60 mg/day) and now I'm tapering off.  My PFTs are stable but she's getting me hooked up with the lung transplant people at Emory which is disconcerting but I guess with RA, it's just one thing after another.  Has anyone had a single-lung transplant and if so, was it successful?  Most recently, I've developed drug-induced lupus (they think it's drug-induced) in response to the Humira I was taking.  I loved the Humira!  I took it and did great for about 9 months and now I'm off of it.

As of now, I have to start taking Plaquenil to get rid of the lupus and I'm down to 10mg/prednisone/day.  My RA is under control but things are starting to hurt.  How soon will Plaquenil work to control joint pain IF it does work?  I couldn't take sulfasalazine either-it made me feel like I had the flu.

I'm a train wreck when it comes to drug reactions-has anyone else had the drug-induced lupus and was the Plaquenil effective in treating it?

magsmom

Posted 10/26/2008 12:21 AM (GMT 0)
I took Remicade and developed lupus antibodies while on it. then I switched to Humira and had a severe reaction after 2.5 months. It induced a lupus flare. They said the lupus antibodies would be gone in 3-4 months. Nine months later and I still have the antibodies and other lupus symptoms. I have now been diagnosed with lupus outright.

I started Plaquenil in mid July. It has been just in the last 2-3 weeks that I think I am beginning to see some benefit from it. My fever is gone, I no longer have night sweats, and my finger joints are less inflamed and swollen. My rheumy told me in might take 3-6 months for it to help with the symptoms.

I too have many problems with medications and rare side effects. Nothing as severe as needing a lung transplant. I am so sorry that has happened. I hope you can remain stable while you await a lung.
Posted 10/26/2008 1:10 AM (GMT 0)

Thanks, Ides!  This forum is so helpful b/c it's hard to feel that you can complain to your friends about chronic conditions.  I'm going to try to keep the attitude that the pulmonary fibrosis is STABLE and that my lung condition is a lung injury that won't get worse. 

I'm sorry about your experience with lupus!  Since I've been off the Humira for 2 months and I still have the rash (though it is significantly less inflamed but just as widespread), I'm wondering if like you, I have regular SLE.  My dermatologist is a good guy and didn't mislead me; he told me that regular SLE was a distinct possibility.  The rash was so severe that it looked like I had the measles!  Was yours like this?  Truthfully, after getting a stable report from the pulmonologist, I just stopped obsessing over the lupus.  I'll hate staying out of the sun, but that's what they make cabanas for, I guess.

Now that I'm tapering off the prednisone, I'm hoping that the RA won't flare up before the Plaquenil can take effect.  Right now I'll just try to take one day at a time.  (It now seems pretty dumb to have obsessed over the 20 pounds I gained since June.)

Thanks for the input!

magsmom yeah

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