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Sjogrens Topics => Living With Sjogren's => Topic started by: babsinga on October 11, 2013, 11:06:16 AM

Title: UUUGH plaquenil side effects...
Post by: babsinga on October 11, 2013, 11:06:16 AM
Hi,

I hate Plaquenil. I think half my hair as fallen out since I started taking it a few months ago. Can anyone reassure me that it will grow back? i know its a vanity issue but my boyfriend brought it up last night and it is disturbing. I tried to get to 400 mg but my stomach won't allow it so I have been on it for 2 months at the lower dose.

Title: Re: UUUGH plaquenil side effects...
Post by: Joe S. on October 11, 2013, 11:48:18 AM
After I went blind from it my doctor said I was better off that way. My sight returned when I quit. Remember it is a form of chemo. Where your bandana proud or find some alternatives that will work for you as I did for myself. I would say what they are but I do not remember.
Title: Re: UUUGH plaquenil side effects...
Post by: SjoGirl on October 11, 2013, 12:14:00 PM
I am sorry you are having these problems, my side effects were far less severe and diminished after several months on the drug. Are you taking the generic version or the brand name? Some folks react differently to the brand than they do to the generic.
Title: Re: UUUGH plaquenil side effects...
Post by: LadyDi on October 12, 2013, 07:16:26 AM
My hair is also falling out, but I am not sure if it is from the Plaquenil or the AI disease.

A previous poster mentioned that Plaquenil is a chemo drug. I would like to clarify the fact that Plaquenil is NOT a chemo drug, but in fact belongs to a group of meds called DMARDS (Disease modifying antirheumatic drugs.) I was told by my rheumatologist that it acts as an anti-inflammatory in the body.

I have had various side effects from this drug and I have decided to stick it out and stay on it. I found that the best way to make my decision was based on whether the benefits outweighed the risks which they did for me.

Good luck & take care.
Title: Re: UUUGH plaquenil side effects...
Post by: babsinga on October 12, 2013, 07:20:06 AM
Hi Lady Di,

My boyfriend said the same thing to me. If the benefits outweigh the side effects, I should stick to it. However the more I read about my test results and especially my elevated ACE levels which are indicative to Sarcoidosis as well as a positive sjogrens antibody test, I wonder if I shoudl be taking Prednisone...  Its frustrating....
Title: Re: UUUGH plaquenil side effects...
Post by: Calli66 on October 12, 2013, 04:58:19 PM
The first thing I think of for hair falling out is thyroid hormone problems, not Plaquenil side effects.

Stomach issues and Plaquenil--definitely YES. I tried Plaq for 2 years at 400 mg and then 200 mg---my digestion was a mess!

So check your thyroid levels (not just TSH, get the Free t3, free t4, and reverse T3 checked). Even if you've been told your levels are "perfect," they may not be, depending on how well your doctor understands thyroid problems, and interprets your labs.

Give Plaquenil a good 8 months or so trial---you should know better then if it's going to be beneficial.

Calli
Title: Re: UUUGH plaquenil side effects...
Post by: lolokonoki on October 13, 2013, 04:05:46 AM
When I was on  lyrica my hair started falling out.  I called my rheumatologist and the receptionist said everyone looses hair every day.  I brought her a Baggie of the hair I had lost that one day and they sent me to a dermatologist.

The dermatologist recommended I use rogaine foam for men.

I stopped using the lyrica, started the rogaine and my locks returned.

It is up to you AND your doctor what you do from here on out.  Doctors don't weigh benefit/risks like we do.

Good luck
Lolo