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Hydroxychloroquine/Plaquenil Fear?!

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Old 04-12-2011, 10:16 PM   #1
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sparkles22 HB User
Question Hydroxychloroquine/Plaquenil Fear?!

Hello everyone!

I have had extreme joint pain for the majority of my life. It wasn't until I was about 13 that things got really out of hand and my doctors started taking me more seriously. It started with ankle pains and repeated ankle sprains, and over time whatever is plaguing my body has come to affect nearly every aspect of my being from head to toe. I hurt constantly and chronic pain has become my new normal. I have been officially diagnosed with Reflex Sympathetic Dystrophy (RSD) in both ankles, Hashimoto's Thyroditis (although one endocrinologist disagrees), and Fibromyalgia and have received a myriad of unofficial and unconfirmed diagnoses including localized osteoarthritis, juvenile rheumatoid arthritis, and autoimmune inflammatory arthritis.

I started seeing a fantastic rheumatologist last September and she actually took my concerns seriously, unlike many other doctors I had seen prior that simply ignored my conditions due to my young age. From the very beginning, her and my primary doctor have both thrown around lupus but neither have confirmed the diagnosis. My rheumatologist feels that I may very well have arthritis of some sort as the traditional fibromyalgia medications still don't nix the ever present joint pain and inflammation. Just in the past six months, my fingers have also started turning and deforming which is definitely not typical of fibromyalgia.

Anyway, now that I have sufficiently covered the background, I had a question regarding the medications I have been prescribed. I have been taking methylprednisolone and nabumetone for many months and I notice a difference in my joint pain, but they don't completely do the trick. As a result, I was prescribed plaquenil back in December. I still haven't started it as I am terrified of the side effects (the potential retina damage in particular). I have talked to both my rheumatologist about this as well as an optometrist and both have repeatedly assured me that it is completely safe. I understand that less than 1%of people experience this, but I have been known to experience incredibly rare side effects of medications in the past. So my question essentially is, is it ok to take this medication without a diagnosis of either of the diseases it is intended to treat? Has anyone else taken this an experienced any adverse side effects?

Thank you so much for your time! Have a fantabulous day!

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Old 04-13-2011, 05:05 AM   #2
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Re: Hydroxychloroquine/Plaquenil Fear?!

Hi, Sparkles, and welcome! After reading what several top US rheumatologists write about Plaquenil & retinal buildup (plus my rheumatologist told me same), I made a conscious decision not to worry. Also, in contrast to the older antimalarials, the very rare buildup that is caused by Plaquenil almost always disappears when the drug is discontinued. Finally, every six months I have a field vision test, as recommended.

Plaquenil turned me around 10+ years ago. I love it.

I'd bet that my rheumatologist wouldn't prescribe Plaquenil without reasonable proof of what condition a patient has. That said, I believe Plaquenil is used not just in lupus & RA, but also in "fuzzier" conditions like UCTD = undifferentiated connective tissue disease.

When you say your fingers are "turning and derforming", what do you mean?
(Curious.) Hope you post more soon. Sending you my best wishes, Vee

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Old 04-13-2011, 05:06 AM   #3
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Re: Hydroxychloroquine/Plaquenil Fear?!

I would try the medication because you can always stop taking it if you notice any eye problems popping up. Its worth trying it to make you feel better, I was hesitant as well when first perscribed but I feel so much better on it. Ask what symptoms you should be aware of for any eye issues resulting from the medication that way you will know if anything starts to happen. As for fibromyalgia - I wish they would either find a way (labs/x-ray) to prove people have it or stop diagnosing it until they can prove it is even real. I was misdiagnosed with it and really have Lupus and Sjogren's, that is a whole lot different from fibromyalgia! Doctors use it as an easy out for people whose blood tests come back negative but my symptoms do not match fibro at all (since when is all over dryness and moth sores the same as all over muscle pain?) Good luck with the medication, it has really helped me a lot.

Old 04-13-2011, 03:27 PM   #4
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Re: Hydroxychloroquine/Plaquenil Fear?!

Hi there! Well, I'm miss natural when it comes to medications. But then I had such a bad flare from this Undifferentiated Connective Tissue Disease UCTD and possibly Lupus that I had to try something. So, I was on medrol (prednisone) for almost two months and yes it took my pain away and felt wonderful, but I ended up having espophugus issues with it. Anway, I started plaquenil just as I was tappering off the Medrol and the pain started to come back. Now I have been on it a month and let me tell you, all of a sudden it is already helping with the fatigue and pain. Even during my best times in the past, I would have two good days and then three painful days and so on and so on. But now, I have barely even noticed my joint aching fatigue pain in the last two weeks. So I can only imagine how much better I am going to feel when it takes full affect in another two months or so.

You have to follow your instinct on whether or not to start it. But I have to say, it already has given me my life back in the same way that prednisone did but without all the harsh side affects of prednisone.

I also wanted to say that I was labeled with Fibromyalgia for the last 16 years and never, never resonated with it. So I decided to say "Forget you drs and try to take care of myself on my own." I did very well for many years with all my natural and spiritual ways of trying to heal and deal with it. But after my daughter, I just went down hill and couldn't take care of it on my own anymore. So I started back with the search again for what was going on and finally after all these years have a real diangosis for the horrible immune system issues I have been dealin with. After they saw how the Medrol was working on me and now with the Plaquenil virtually taking away all my pain (which it wouldn't do if it was just Fibromyalgia) I know they just didn't know what to label me with all these years. So keep up trying to figure out what is going on with you if the Firbo does not fit you.

Best of luck!

Last edited by RoseRincon; 04-13-2011 at 03:34 PM.

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