Does increasing titres of SCL-70 mean anything? Any user experience with Plaquenil?
Posted 20 July 2012 - 10:38 AM
Also, she is suggesting that after I see the Rheumatologist, I try out Plaquenil. I was curious for any feedback on this medication.
Thanks! I've been away because of my newborn. I'll try and put a picture of him up shortly.
Posted 20 July 2012 - 12:21 PM
I've found you links about the Scl-70 antibody on our autoantibodies medical page and also a thread on Scl-70 which I hope you'll find interesting and informative.
I've never taken Plaquenil, but I know that many of our members have had a successful use of this drug; again I've found you a thread on Plaquenil usage by some of our members.
Many congratulations on your newborn son and I'm looking forward to seeing the photos of him!
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Posted 21 July 2012 - 09:15 AM
I can't advise you on on the SCL-70 as I've always tested negative on my antibody screens, but I have been taking Plaquenil for over a year now. Mildly upset my stomach for the first month or so, but that went away quickly. I do get my eyes checked every six months, and so far, no adverse effects there. Effect-wise, it's definitely not a "wow I feel great now" difference, but after around 6 months there seemed to be a gradual lessening of my fatigue, and now overall I have less days of drop-dead, in-bed fatigue than I used to have. My lung function tests have stabilized over the past year too, at around 75-80% -- before Plaquenil, I'd dropped from 100% down to less than 80% over the previous year, so I'm sure it's helped with the systemic inflammation. I'm disappointed that my joints and muscles don't feel better though....
I'm seeing my rheumatologist next week for my 3 month check up; he spoke last time of possibly adding a new med, leflunomide (Arava). It seems like it's a hit or miss with meds, while some meds might work well for some of us, others respond better with different meds, and unfortunately, a lot of the meds take quite a while to see an effect, so it's a lengthy process to get a medication regime in place that's working well. Hope you are lucky and Plaquenil works well and quickly for you!
Keep in touch when your son is napping and you have a few minutes!
Posted 21 July 2012 - 07:08 PM
I was tested 6 years ago for SCL-70 and tested positive. The test was repeated and it was positive again, same exact result. I haven't had the test done since then. I don't think my doctors felt it was worth repeating the test over and over.
I've been taking Plaquenil for about six years. It takes awhile for it to start working -- up to 3 months, if I'm remembering correctly. It's funny, because I don't think about it doing much but when I've had to go off it for surgery, my skin and nails turned awful. My skin swelled and was very fragile and my nails split and broke. I was glad to resume it.
Congrats on your baby! If you take Plaquenil, I hope it helps you.
Posted 22 July 2012 - 01:16 AM
It's strange how scleroderma affects people so differently. Thank you red for your answer in particular since I'm especially concerned about myalgia right now.
Does Plaquenil help at all with GI related issues– or should I expect to supplement my diet with additional proton pump inhibitors?
Posted 22 July 2012 - 02:27 PM
I have been on plaquenil (hydroxychloroquine) now for a couple of months I think? Can't site any improvement as yet but then it is early days. I am hoping for an improvement in fatigue mainly. I have never heard of it improving gastrointestinal issues only fatigue and for some people pain (sorry Red but I am encouraged your fatigue improved) but that's just me. It's an antimalarial drug.
Congrats on baby and I look forward to seeing some pictures. I love babies and am going to be a grandma again!
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