Plaquenil for scleroderma?

I visited my rheumy today and he has prescribed plaquenil to help treat my scleroderma. I have limited (CREST) scleroderma. My symptoms seem to have worsened over the past couple of months, mainly, extremely fatigued & a lot of joint pain. Also, I am noticing that I become much more short of breath than I ever have before. I have always been very active, could work in my yard all day, mowing grass, running a weedeater, etc. However, this spring, I noticed that I can only work for about 15 minutes before I become so short of breath that I can't even speak. So, I rest for 15 or 20 minutes until my pulse & respirations become normal and work for a while longer. I am waiting for an appointment for my PFT's. I'm just mostly concerned about starting on plaquenil. Has anyone else had any experience with this medication for scleroderma? Good/bad? Just looking for more info. Any help/advise/input is much appreciated.

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I take Plaquenil for MCTD and it really helps my joint pain but it doesn't do anything for the more scleroderma - like features like Raynauds and GI issues, and It will not help Scleroderma lung problems. It is mostly used to reduce lupus flares and is sometimes called lupus life insurance, but is also often used in RA and other autoimmune diseases. It is especially good for inflammatory symptoms like joint pain and fevers and rashes. It will also help with fatigue. Compared to other DMARDs it is very safe( any drug has risks) but you do have to have your eyes checked yearly by an opthamologist for a rare side effect of retinal toxicity. One interesting side effect can be very vivid dreams! If you have a lot of joint pain, it is worth a try, as it is milder than many of the more toxic immunosuppressives. It does take a long time to start working-- can take 6 months but it started helping me after 2 months. Some docs will start you out with a small burst of prednisone to calm things down while waiting for the Plaquenil to kick in. But with Sclero patients you have to be wary of using prednisone as it can cause scleroderma renal crisis. Is your Rheumy a Sclero specialist? I hope you get to feeling better. Blessings

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Thanks for your input. I really appreciate it. My rheumy is not a sclero specialist. I am thinking about looking into seeing one soon. Again, thank you!

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You guys have helped me know a lot about scleroderma. Thanks

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I have been taking Plaquenil for about 14 months (I think it took about 4-5 months to truly kick in for me) now and until recently, about the last month and I don't know if it is the Plaquenil that is at fault here, it has made a difference. I haven't had any adverse reactions from it. It took a while to work, but for me it basically made me more stable. In other words, while it didn't get rid of my fatigue or bodily pains, it made it where I pretty much knew how I was going to feel from day to day. My new normal, I call it. You always have bad days and good, but they were more infrequent, once the Plaquenil kicked in.

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I am more concerned with your breathing problems! Pulmonary hypertension is found in 25% of scleroderma patients. It is the leading cause of death for us too. You need to get an echo right away . Dont waste your time or money with a doctor who is not a specialist in your disease. Plaquinel takes awhile to kick in.

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I have been on Paquinel for a couple of months now and I do notice my hands dont get as cold.
Right now I am dealing with a horrible finger ulcer and may lose it but again maybe not.
I did see a slight improvement yesterday, crossing fingers. My Rhem said it may take 6 months
to notice a difference too. But I know there is something that has changed my circulation for the better.

I hope you have more good days than bad days. Rest and eat well, I'm trying.

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Thank you everyone for your input. I will give placquenil a try. I have already had an echo about 5 months ago. Am waiting to have PFT's.

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they started me on plaquenil at first too, but now I am on low dose prednisone, 5 mg, long term. I was just to stiff I could barely move, helps with lungs too, but I am also on cellcept for lungs. will be good to have the PFT's, it is so frustrating to want to do things and not be able to climb a set of stairs!

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I'm sorry, dont have lung issues. I have Crest, mostly Raynauds for now anyway.

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I have crest limited, I was diagnosed since 1999. The only meds I've been on is inflammatories. But I do have problems.

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