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#1 marsha

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Posted 02 November 2013 - 07:07 AM

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



#2 Margaret

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Posted 02 November 2013 - 11:39 AM

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



#3 Joelf

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Posted 02 November 2013 - 12:16 PM

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,


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#4 Sweet

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Posted 02 November 2013 - 03:02 PM

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 doc 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. 


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Pamela
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#5 marsha

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Posted 03 November 2013 - 04:07 PM

Thanks everyone,

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

Thanks



#6 Sweet

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Posted 13 November 2013 - 03:34 PM

How are you doing on it?


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Pamela
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#7 marsha

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Posted 13 November 2013 - 04:23 PM

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



#8 Amanda Thorpe

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Posted 15 November 2013 - 06:11 AM

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.


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#9 Sweet

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Posted 16 November 2013 - 03:40 PM

OK, I will be thinking positive thoughts for you!


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Pamela
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#10 red

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Posted 17 November 2013 - 10:11 AM

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 rheumy 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



#11 Shelley Ensz

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Posted 04 December 2013 - 11:03 AM

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
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#12 marsha

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Posted 07 December 2013 - 01:48 PM

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



#13 Joelf

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Posted 08 December 2013 - 01:19 AM

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,


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#14 Shelley Ensz

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Posted 09 December 2013 - 08:22 PM

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
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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.

#15 Sweet

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Posted 10 December 2013 - 12:30 PM

Yay, that's good to know. Keep up the good work. 


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Pamela
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#16 Amanda Thorpe

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Posted 10 December 2013 - 01:46 PM

Hello Marsha

 

Glad to hear it and I would guess improvements will continue if you've already felt better on it.

 

Take care.


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#17 marsha

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Posted 16 December 2013 - 02:40 PM

Well it's been a couple of weeks, and I am right back where I started from.. :( my Raynaud's is so bad that even with hand warmers  and mitts on, my hands are hurting and blue. I live in northern Maine and winter hasn't even officially started!!

 

What am I going to do for another 5 months… I actually have to bump up to two pills starting Thursday. I hope it will help.   I know my Dr. said it takes months to really feel the effects of the medicine.. I will keep trying.

 

Keep you all posted

Marsha



#18 Joelf

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Posted 17 December 2013 - 12:37 PM

Oh no, Marsha; what a shame! I am sorry, especially because it sounded as if things were improving for you when you first started taking Plaquenil.

 

I understand that it does take a little while sometimes to get the full effect of medications and perhaps as you're increasing your dose on Thursday, it might show an improvement after that; I do hope so! Also, I'm not sure if it would specifically target the problems you suffer due to Raynaud's, but perhaps you might find that after a few  months on it, you'll feel less fatigued and your joint pain will be improved.

 

Perhaps you should go back to your doctor and explain the problem and see whether he can suggest anything to specifically ease the pain of the Raynaud's as well? 

 

Kind regards,


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#19 marsha

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Posted 17 December 2013 - 04:51 PM

Joelf,

I actually talked to him last week and he said to give the plaquenil 2 weeks to see if it does improve my Raynaud's and if it doesn't he knows of a specialist in Worchester, MA who specializes in Raynaud's.

 

I think I should have him refer me, just because it could take months to get into this Dr. I am keeping my hopes up on the plaquenil and will give it the full year he wants me to. Thanks for all the kind words… Marsha



#20 Amanda Thorpe

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Posted 20 December 2013 - 12:10 PM

Hello Marsha

 

It's my understanding the plaquenil does nothing for Raynaud's. It should help your fatigue and joint pain though. Getting referred now for a doctor that has a long waiting list is a good idea.

 

Take care.


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