NRAS
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Hydroxy

So, saw my rheumatologist today. He says ra still active (moderate) I’m on top whack sulphsalazine, got taken off Mtx a year ago, the natural progression seems to be to try adding in hydroxychloroquine. He has been very ‘unpressuring’ knowing I’ve not had a good experience of medical professionals and given me a script to fill when I’m ready. I know many of you have had side effects and bad experiences but I would like to hear any positives please!!

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I did have some side effects (I know, you didn't want to hear any!) but I'm replying because I managed them as it worked so well for me, until it stopped working, then I changed to methotrexate. Have since tried sulfasalazine & leflunomide, both withdrawn so remain on MTX & low dose steroids until my appointment in May.

I hope it works well for you, try not to leave it too long to fill your script & start taking HCQ. Your SSZ will still be working of course but it'll be a good few weeks before HCQ starts helping & meantime you've disease activity going on. Fingers crossed for good results.

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Thx, that’s heartening. I will bite the bullet! Fingers crossed.

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Hi I used to take Hcq and had no issues whatsoever. I was warned about heartburn so took it after breakfast. Hope you have the same experience!

Paul

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Hello I have recently started this medicine for sjorgens it's too soon to say if it's working but absolutely no side effects.I hope it suits you and helps.Jane

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I've been on HCQ (initially alongside prednisolone but then on its own) for 18 months. It took a while before it started working but have been in remission since last summer. In my case remission means no pain, no swelling no fatigue. Slight stiffness in the morning and occasional twinges which is RAs way of reminding me it still lurks in the background. We are all different in our response to drugs but so far at least HCQ is the one for me.

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Hi I've been taking them for over 5 yrs now, no problems. You must get your eyes tested before you start taking them & then at least once a yr whilst your on them. I take one in the morning & one in evening always with food. I did have a slight rash in the beginning & my skin was more sensitive in the sun. I was given a different brand once Quoric (not sure if that's the correct spelling) & they made me feel sick but the pharmacist has got to know me now & knows I can't take that brand. Give them a go. Let us know how you get on.

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Hi, I’ve been taking Hydroxy for about six months and have no side effects whatsoever. It’s such a relief after my experience on Mtx. My symptoms are minimal atm and best of all I have good levels of energy again! I hope you have a similar experience. Best of luck.

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Fourteen years on Hydroxy. Works ok I think as I've always had something alongside it over the years...MTX, Etanercept snd in recent years RTX.

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Ive been taking it nearly five years alongside Methotrexate. It was the first thing I was started on.

I had an upset tummy to start with but it settled down.

I’ve had some long periods of remission (having a bit of a wobble at the moment).

Annual eye tests are a must.

As with all things RA you just have to try it - what works for one person doesn’t for another. Plus perseverance helps - sometimes they take a while to settle (several months).

Don’t be afraid to try it!

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Thank you all. This has been an enormous help and boosted my nerve!

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I have been on HCQ for about 5 years now. I have mine half way through my breakfast so that my stomach is nicely lined with food. I have not had any side effects.

Make sure though that you get an eye test before you start the drug, and get your eyes tested once a year.

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I have been on hydroxychloroquinine for 2 years with no side effects from it. It’s the only one I have tolerated. I am also on Benepali. I’m on prednisalone but that’s for PMR.

Hopefully it will be a good move forward for you.

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I also take sulphursalanine and have been on hydroxyclhloroquine for about 8 years. I am supposed to take 2x a day. But after a while I get very itchy skin, was told this is not one of the side effects but after dropping to one a day the itching stopped. I now alternate between one and two a day. But no other side effects. Hope it works well for you

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Took my first one this morning. I’ve been prescribed one a day. I’m hugely anxious about a new med but my hands were v stiff this morning which gave me a push. Been very grateful for all the replies here. Thx

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