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Plaquenil (Read 4344 times)
starfish
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Plaquenil
02/17/13 at 04:13:40
 
Does anyone take Plaquenil (Hydroxychloroquine) for SM?
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KatFromMD
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Re: Plaquenil
Reply #1 - 02/17/13 at 05:04:38
 
I've been taking it for a number of years now to help with my joint pain long before I finally got the MCAS diagnosis.  Dr. Afrin didn't see the need for it, so just five weeks ago I stopped taking it.  The pain and stiffness in my hands has returned, though not horribly so far (it takes six weeks to entirely clear the body).  I'm going to discuss with my GP tomorrow whether I should try to tough it out while I experiment with other mast cell drugs (in order to be able to tell if they help with my joint pain), or if I should go back on it.

The one thing you should know...it's a pretty benign drug and generally has no side effects (and I react badly to just about everything!), however, in very rare cases it can cause irreparable damage to your retinas over time.  I have had to go to the ophthalmologist once a year for an exam and retinal scan just to make sure no damage is occurring.
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Anaphylaxing
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Re: Plaquenil
Reply #2 - 02/17/13 at 11:30:30
 
I have heard this is being tried on some
Patients of the Boston group as well as in Canada under their guidance, but I have not taken it myself.
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shabrans
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Re: Plaquenil
Reply #3 - 03/24/13 at 10:34:30
 
I was going to ask same question myself as Dr Akin has just recommended it- said some of his patients are getting good results from it. I am worried about the potential retinal problems though.
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vicmjones
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Re: Plaquenil
Reply #4 - 04/01/13 at 13:22:34
 
I was on it for a while and it did help with joint pain and dry eyes quite a bit. But I was SO weak on it, I was training for a triathlon and my training times went WAY down (2 MPH on the bike and 1-3 minutes per mile running).  When I raced my race times were HORRIBLE.  I also had swimming induced pulmonary edema for the first time while on it and almost drown as a result. I went off it due to almost drowning and within a week my training times all went back up to where they had been. It was an amazing change. I also have not had the swimming induced pulmonary edema again. I decided that I could live with the pain easier than the loss of speed and the pulmonary edema.
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shabrans
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Re: Plaquenil
Reply #5 - 05/12/13 at 13:57:50
 
I have to say, I did end out starting this last month but only 1 daily which didnt seem to make much difference. Started twice a day dose beginning of this week and am seeing a difference. So far no side effects except mild nausea first day or so.
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