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Scleroderma & Raynaud's UK (SRUK)
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Hydroxychloriquine

Hi

I’m constantly putting off taking any meds due to all the side effects and keep plodding on with pain etc.. but I’m constantly being pushed to take the above does anyone have any info on it please.

Will it make me feel better??

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Hi, I've been on hydroxy for about 18 months now. I'm very sensitive to medication but luckily have received no side effects from it. I feel it's made a great difference although it did take quite a few months to feel that way. Been given immunosuppressants but like you, really suffered with bad side effects. You should give the hydroxy a try, but just remember it takes a few months. Hope it works for you.

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Is that an antidepressant or what is it usually used for please?

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No it's not an antidepressant, it's was originally used as an antimalarial drug but they found out that it works well with autoimmune diseases. As I've said, it's not immediate and needs time to build up in your system. Hope this helps

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Hello, I started on Hydroxy, but it caused my very dry mouth mouth, Sjogrens, to be even drier, so it was stopped. But now the pain in ankles, wrists, shoulders is so bad I'm considering giving it another go, particularly as the Docs don't think the worsening of the mouth was connected. I does take up to 3 months to work. Give it a go, best of luck.

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Thanks all xx

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Hi Ncoff, I take hydroxy, ( amongst lots of other meds) and have done for a couple of years, and have found it very beneficial, unfortunately there is no 1 magic pill that works for all our symptoms, so its a case of taking different meds, some agree with us some dont. Some take a while for us to see a result, some have an immediate effect. We are all different, so we all need a different regime of meds, its just a case of finding the right ones and feeling the benefits. I hope this helps, take care. smile and wave, smile and wave.

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I’ve had it at max. Dose for years. It takes a long time (like everyone else says) and I personally have had no side effects and my doctor told me it’s usually pretty benign - most of his patients (he has about 40 with ssc) are fine on it. It’s nothing like the immunosuppressants - they made me so ill. Hydroxychloroquine is an anti-malarial drug categorised as “disease altering”. I’d encourage you to try it :) if you don’t get on with it after a few months you can always arrange to stop - better than not trying at all x

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I’ve been on this drug for 3 years at max dose and it definitely has made a difference. It does take a few months before you notice any change. I’ve had no side effects and although it doesn’t cure all of this complex illnesses, it certainly helps in a big way. Hope this helps in your decision.

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Hello Ncoff

I've been taking hydroxychloroquine ever since my diagnosis about 4 years ago. Like you I was hesitant to take so many drugs because the leaflet with the medication is scary - but they always spell out the worst possible scenario. It is an autoimmune suppressant to help control the disease. I did lots of Googling and read about this drug. The main consensus is that is one of the earlier drugs used for our condition - consultants seem to consider it the one that does the job with the least side effects. It will calm your symptoms down but like the other people have said you have to give it time. I've had no side effects. Before I began the medication I had terrible red telangiectasia covering my feet and legs up to and sometimes above my knees. It was very unsightly and bright red. It has now calmed down and looks more like a patchy suntan. I don't know about it affecting Sjogrens syndrome (dry eyes and mouth) I was told I had Sjogrens before the symptoms appeared which they did eventually - so I'm unsure if I can blame the medication for the progression of my Sjogens. I hope everyone's comments will help you give Hydroxy a try - it seems to be the safest option. My consultant told me 'we can't cure you we can only manage it' - so I'm afraid we have to settle for that. Hope you soon feel less worried. Do let us know how you get on. Hugs all round for everyone - we could do with them.

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Thank you everyone I think I will go ahead with it in my next visit thank rheumy. I’ve got to try and hopefully will have a better quality of life for my daughters sake

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Good luck, or as we say in France Bon Courage. I've been taking hydroxy for over 20 years and find it good, with no side effects, but it is very important to have the specialist eye people check you annually as there can be eye problems, but I have taken max dose fot a long time with no problem.

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Hydroxychloroquine has literally changed my life. I would hate to be taken off it. You will need to have annual eye tests but eye problems with it as a rare complication is bulls eye retinopathy. I am under eye consultant due to my many eye problems and my consultant was still happy to let me have this drug. It has helped so much with fatigue and pain also reduces inflammation so helps to protect your organs. Of all the drugs you could be offered this is the safest. Takes about 3 months to start working. One bit of advice is to try to ask the Pharmacy for zentiva or black rock as these seem to be a lot easier on your stomach and always take it with food. X

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Thank you if it helps with the fatigue I’ll def try anything

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It has made a huge difference for me, my joint pain is much more tolerable taking it than not. I have sensitivities to medications so I was concerned but it has help way more than hurt.

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