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marsha

Plaquenil

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Does anyone have any experience with Plaquenil? I have an eye appt. on Tuesday to check my retinas and then if all is ok I am supposed to start it. I have to tell you I am a bit nervous I hate starting any new medications. Just wondering what the consensus of this drug is amongst users.

Thank you

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Hi Marsha ,

 

My son,  Gareth, has been on Plaquenil for over 6 years now with no eye problems caused by it.  He has developed Sjogrens (dry eyes/dry mouth) even though he is on the Plaquenil and Plaquenil is suppose to be the treatment for Sjogren's.  After 3 months on the Plaquenil,  his esophagus was working again plus it loosened his chest cavity and vocal cords, too. His diagnosis started as sine scleroderma and was switched to UCTD.

 

Take care,  Everyone.

Margaret

Mom to Gareth,  25 years old, DS/ASD

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Hi Marsha,

 

I've never taken Plaquenil, but many of our members do and it does seem to be quite successful in a lot of cases. I've found a couple of threads about Plaquenil - used to treat CREST and another about Plaquenil which has lots of advice on the eyesight question which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Yes! I've been on it for 13 years. It has helped me tremendously. It helps with pain and fatigue. It even has the ability to slow or stop progression. Biggest side effect is plaque build up behind the eye causing blindness which is irreversible, therefore the need for eye exams. The one you are about to get sounds like your baseline exam. Then you'll have them every 6 months to a year depending on what your doctor wants. I had them every 6 months for several years, and now I go once a year. They have done other studies on my eyes as well, just to double check as I was having some vision problems, but it was more blurriness due to dry eyes. 

 

The first 6 months I was on it, I was a little nauseated, and lost some hair, but that all evened out. 

 

Good luck, let us know what you decide. 


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks everyone,

Its so nice to be able to have questions and get such great feedback… 

Thanks

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Sweet I have not started it yet I am planning on starting on Sunday… I have to admit I have been really nervous about it.

I will let you know as I get started.

 

Thanks

 

Marsha

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Hello Marsha

 

Many people take plaquenil with no problems whatsoever and you could well be one of those. I understand that you're supposed to have regular eye exams though.

 

I took plaquenil for a few months and experienced a decrease in pain and fatigue, about 15%, and was delighted with the drug. Unfortunately I developed abdominal pain and despite 3 attempts to restart the drug the pain came back each time and it was severe enough to negate the positives. I have actually been thinking recently that I might give it another go, seeing as how much of a difference it made.

 

I hope you find it beneficial and look forward to hearing all about it!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha, is today the day you start your plaquenil?

 

I've been on it for a few years now.  I remember it mildly bothered my stomach - queasiness - when I first started it, but that side effect went away within a couple of weeks.

 

My rheumatologist warned me it would take up to 6 months to feel an appreciable effect, and yes it did seem to take that long for me to notice a gradual lessening of my fatigue issues.  I did stop working during that first year on it, so, at the time, I wondered whether I had less fatigue because of the plaquenil or because of my new lifestyle's slower pace.

 

Found out for sure this past year, when I stopped taking the plaquenil on a trial basis -- sure enough, after less than a week off the plaquenil, the fatigue rebounded big time, back to sleeping 12+ hours a day and still having difficulty keeping my eyes open in between naps.  Took about a month back on it to get back to my "normal" energy levels, still not great, but lots better than off it.  Didn't do much, if anything, for my pain levels though, unfortunately.

 

I get my eyes checked every six months, no issues so far. 

 

Hope it works for you, with little or no side effects!

 

Hugs,

red

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Hi Marsha,

 

How are you doing on the plaquenil?  My rheumatologist advised me to take it at bedtime, so that I would sleep through the worst of any potential side effects. However I never noticed anything except eventually feeling a lot better, with less pain and fatigue.  For me it kicked in after just a few months. 

 

After many years I had to go off it, since my psoriasis got suddenly worse. You aren't supposed to take plaquenil with psoriasis but my pre-existing but comparatively mild case of psoriasis had limped along undiagnosed for ages, each little patch being treated with cortisone creams or even entirely ignored, until it finally made an unmistakable appearance with that particular flare.

 

I continued to really miss plaquenil for many years. The only comparable relief for fatigue and pain that I found was briefly with neurontin (until I had side effects that forced me to discontinue it) and then with UVA1 phototherapy treatments, which as a special bonus for me are also good for psoriasis. With Gene so severely sick the past three months, I fell off the UVA1 wagon, but am re-starting treatments now.

 

In general, plaquenil is very well tolerated by most people; and especially if you build up the dose slowly and take it at bedtime. The eye side effects are so rare that my eye doctor said he'd never seen a single case in over 50 years of practice (or was it that he had seen only a single case?  I forgot!). But still keep up with the regular eye checks your doctor recommends anyway, since any damage can usually be halted if caught in time, and if I remember right, it is not noticeable in your vision, it is the sort of thing that flies under the radar and is picked up only on certain eye tests, in the early stages. In other words, never skip out on your regular eye checks, simply enjoy the extra time it gives you to bond with your ophthalmologist, but never worry about it, either.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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After much procrastination I have started the plaquenil and so far so good, no side effects and actually the joint pain and inflammation in my right hand is a bit better :) I am hoping it will keep getting better and better. 

 

I will keep everyone abreast of my progress :)

 

Warm warm hugs

 

Marsha

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Hi Marsha,

 

That's really good news that you're getting on well (so far! ;) ) with the Plaquenil.

 

Here's hoping thimgs will carry on improving at the same rate!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha,

 

If you are already noticing a bit of improvement, odds are very good that it will just keep getting better and better for you.  Once I started getting improvements, it kept on improving for awhile too, before it finally leveled off.  Within six months of starting on it, I was better off than I had been in years.  I felt like I finally had my life back, even though I was still a far cry from normal-normal. 

 

It's amazing how many hours a day pain and fatigue can steal from us, isn't it? And a near miracle when we find any treatments that reward us with more functionality.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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