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Plaquenil pros and cons


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#1 Vanessa

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Posted 24 January 2012 - 03:54 PM

For months now my skin has been thickening (I have now reached the point where I feel as though my arms are going to split like a sausage) and been extremely inflamed and painful.

A month ago I started on Plaquenil and prednisolone. It has helped a bit with the inflammation but on reading various items on the Internet, Plaquenil seems to be for joint pain and inflammation but skin is not mentioned.

I seem to be able to keep that in check with my daily Pilates and if that is its main effect I would rather not take it.

I understand that it can cause blindness and, albeit rare, weighing up the pros and cons I am not sure if it is right for me. I would really appreciate some feedback.

#2 Joelf

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Posted 25 January 2012 - 07:46 AM

Hi Vanessa,

I've never taken Plaquenil, but many of our members do and it does seem to be quite successful in a lot of cases.

We have a very useful thread here on Plaquenil with lots of advice on the eyesight question. There's also another Plaquenil thread as well which I hope will give you some more information.

Best wishes,

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#3 Amanda Thorpe

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Posted 25 January 2012 - 12:23 PM

Hello Vanessa

I haven't taken plaquinil and everything I say is based on what I, a non medical professional, have gleaned from people who are.

Is it possible that it is the steroid that has so far made you feel better because I thought that plaquinil took about 6 weeks to kick in so if you have only been taking it for 4 weeks you may not have give it enought time to do anything.

As long as you have regular eye examinations you should be okay as the eye effects of plaquinil are rare particularly if you have regular checks.

As I said I know of many people on plaquinil having a good experience of it so maybe give yourself more time before you decide anything?

Take care.
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#4 Lynnie

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Posted 27 January 2012 - 08:34 AM

Hi Vanessa,

Your post touched a cord with me; I can only tell you from my own experience with plaquenil. I was put on 200mgs twice a day about a year ago and sadly after 2 months I reacted to it very badly, skin just inflamed and was totally horrid!.

I was then prescribed Mepacrine which is a quinine based drug; I managed to tolerate that for 7 months and I started to react not as badly but enough to discontinue it.

It seems that some people can tolerate these types of drugs others cannot; I happen to be one who is not able to.

My rheumatologist weighed the pros and cons of what the best course of action to take and decided for me and the management of my symptoms (I suffer Limited sclero) prednisolone was my best option; I take 7mgs a day and I'm grateful for the relief it brings me, it helps. I admit prednisolone is not ideal but what drugs are!

Drugs are very much a personal thing with doctors and patient but I agree with the others the relief you are having is very likely to be the prednisolone. Folk either love it or hate it, but the quality of my life would be the poorer if I did not take it.

Vanessa, whatever you decide is the best for you is key and how you feel in yourself, give the plaquenil a bit longer if you are not reacting as it does take a while to get into the system but if you are unhappy about it, discuss the concerns you have with the doctor and take it from there.

We are our own advocates and the disease is so individual, but, we have to be settled in our minds what we do and take to manage it with the help of the professionals ...but we are the ones living with it!

Hope you settle into a regime you are happy with and which benefits you.

Hugs,

Lynn

#5 Margaret

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Posted 28 January 2012 - 07:01 PM

Hi Vanessa ,

My son was put on Plaquenil 9 months after being diagnosised with sine scleroderma. At the time, he had esophageal dysmotility (2/3rds of his esophagus), positive ANA, + Anti-RNA Polymerase 1/111, severe fatigue, and tightening of the chest cavity (chondro?). Anyway, it took them quite a bit of time to decide to try Plaquenil because he didn't 'fit' the scleroderma pattern. He was only 18 years old and male. It was 3 months later that he told me his 'food tube' was working again. He's been on it for 5 1/2 years now with no significant side affects or flares since. His biggest issue, like many of you, is the overwhelming fatigue/tiredness. I did ask his rheumatologist about taking him off it and she said 'NO'. His diagnosis now is considered UCTD.

Take care, Everyone.
Margaret

#6 Shelley Ensz

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Posted 07 February 2012 - 11:25 AM

Hi Vanessa,

I was on plaquenil for years but had to discontinue it because of psoriasis. It is one of the best rheumatic drugs with the fewest side effects. It usually takes several months to kick in. For me it not only helped with joint pain but seemed to settle things down overall. It is tons safer than prednisone, which is very dangerous for scleroderma patients, even at low doses. They strongly recommend that we avoid steroids long term, and use nothing more than low dose steroids for a few weeks, max. See Prednisone/Steroid Warnings for Scleroderma.

Regular plaquenil eye exams should quell concerns about eye complications, which are very rare. I was advised to take it at bed time, so I would sleep through any other side effects it might cause me, but I never noticed any side effects at all -- except feeling a lot better, less fatigue, less joint pain, and fewer issues overall. Perhaps my skin involvement slowed because of it or perhaps it was just the natural course of the disease.

For me, it turned out that I had had psoriasis before I started on plaquenil but it was never diagnosed because my primary doctor just kept on saying it was due to my autoimmune thing, or connective tissue disease, and it never went any farther than that. When I finally saw a different doctor, during a psoriasis flare, it was diagnosed immediately. Then I had to discontinue the plaquenil because it can cause head-to-toe psoriasis breakouts (in people who have psoriasis).

I may be wrong (I often am!) but I think there are more listed side effects for aspirin than there are for plaquenil; and by a very long shot, it would seem to be safer than steroids, especially for scleroderma patients.

Basically, plaquenil's effect is to modulate the immune system, which is something that could be quite beneficial for some of us. You can do what you want, but you might want to consider giving plaquenil more of a chance, and be far more wary of the prednisolone (prednisone/steroid).
Warm Hugs,

Shelley Ensz
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#7 Shelley Ensz

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Posted 07 February 2012 - 11:28 AM

Vanessa, I forgot to give you some warm hugs -- plus kudos for doing pilates every day, too. That is great self-care!

:emoticons-group-hug:
Here's the Sclero Pilates Happy Dance:
:emoticons-line-dance:
:emoticons-clap:
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.

#8 Amanda Thorpe

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Posted 07 February 2012 - 12:13 PM

You, know I gotta get on plaquenil if it helps with fatigue. I mentioned it to rheumatology last year but never followed it up because when I saw pulmonary hypertension it was all about my heart again! I am waiting for the scleroderma nurses at the Royal Free to ring me back about trying azathioprine as I have stopped mycophenolate and must remember to ask them about taking plaquenil.

Take care.
Amanda Thorpe
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#9 Buttons

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Posted 07 February 2012 - 02:23 PM

Hi Vanessa,

My rheumatologist was going to give me Plaquenil but he decided it wouldn't be suitable for me due to having problems in the past with my retina so he has put me on methotrexate and that seems to be helping my joints a little. Also it does seem to be making me feel warmer & is seems to be helping my Raynaud's. My dose is still being increased & I've had hardly any side effects; like Shelley I was told to take it at bedtime so if I did have any I would sleep through them.

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