Hydroxychloroquine : Hi I went to my rheumy nurse... - NRAS

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Hydroxychloroquine

oKerrio profile image
12 Replies

Hi I went to my rheumy nurse appointment this morning who prescribed Hydroxychloroquine to take along side My sulfasalazine. What’s this drug like side effects etc. Bad/good experiences with it? My mum had it made her really ill how about everyone else?

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oKerrio profile image
oKerrio
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12 Replies
Jarme profile image
Jarme

I’ve taken Hydroxychlorquine for 5 years and haven’t had any side effects! You’ll need to have eye exams when you are on this medication!

Caza profile image
Caza

I’ve been taking it for 6yrs now. Slight rash at first, soon went. I’m more sun sensitive. I was told to have an eye test before taking them & then every 9-12 months thereafter. I started on one a day & then 2. The only problem I’ve ever had with them is when they changed the brand, the new ones made me feel sick back to the old brand & it’s great no problems at all. Good luck

SnooW profile image
SnooW

I was on this for a few months. I found it easy to take, and alongside methotrexate, it helped put me into remission. Unfortunately I got migraines, bad headaches, and vague visual disturbances, so had to come off it.

Ruth12345 profile image
Ruth12345

Ive been on it for nearly year, was 3rd med after methx and sulph. As others say need eye tests annually. Ive had some issues but cant say which med has caused them as on all 3, however settled enough not to want to stop them as generally I have improved and near to remission. Thats my experience so far. I wish you well.

Ssmart profile image
Ssmart

I was diagnosed this winter just gone, and I’ve been taking Hydroxychloroquine alone for 4-5 months now, I am more sun sensitive but a little extra sun cream never hurt anyone 😁

Other than that no side effects so far will be having annual eye exams, and after just two months I could feel things calming down in my joints, fingers crossed it continues, it’s onr of the drugs with the least side effects I hear, or more minor ones, and it seems to be working for me, all the best to you! Let us know how you get on when you start it, I’m on 200mg twice a day xxx

Fra22-57 profile image
Fra22-57

Made a huge difference to me .consultant thought he had added it before and I wish he had as I wouldn't of suffered so much.I have had no side effects and I take 400mg a day

Matilda_1922 profile image
Matilda_1922

I took hydroxy for just over a year. OK at first then I started getting visual problems and migraine so was taken off this on the advice of eye specialist. This is a one off as I know many people taking it with no problems with hydroxy

juneann profile image
juneann

Fourteen years on Hydroxy and always alongside something else. Apart from sun sensitive it seems ok but never really aware of it's benefits either.

Bookworm55 profile image
Bookworm55

I was on hydroxychloroquine with methotrexate for 2 years with no real problems and it certainly kept my RA under good control - though that could have been the mtx of course. I cut hydroxychloroquine dose down to 200g from 400g a day about a year ago and have now been told by the opthamology dept to stop it completely due to damage spotted on my macular (retina) despite no eye symptoms. The eye tests are therefore very important just in case you are one of the few people to develop this side effect. Hope all goes well for you.

Grottybags profile image
Grottybags

When I first started it I had 6 to 8 weeks of feeling travel sick all the time, not as bad as true vertigo but that weird feeling people get on ferries etc. I took Kwells religiously for the symptoms.

That eventually abated and other than being incredibly sun sensitive now (I have always got sunburn easily though) and a suspicion that my lactose intolerance either started or became noticeable at last from starting it, no other side effects. The regular eye tests show nothing untoward either.

Been on it for 6 years with a short time off it when a rheumatologist said I was in remission (I wasn’t)

Mandalou profile image
Mandalou

Hi oKerrio

Hydroxychloroquine is actually an antimalarial but used now as it is beneficial as a DMARD.

As others have said an eye test at the start is important and then every year to keep a check on any deterioration that long term this drug can accelerate.

I take it twice a day along with Benepali injections once a week. I can't take Mthx or sulfa or Leflunomide as my liver can't tolerate them.

I get an annoying itch with Hydroxy but I take Certrazine Hydrochloride alongside it and this keeps it in check.

All in all it's a good drug and well tolerated by most.

Mx

Bx12 profile image
Bx12

Hi I took it for one day alongside leflunomide, and felt dreadful. My eyes went numb, my lip cracked and my body felt as if it were in a washing machine so churned up. needless to say I did not take any more. Not a good experience.

I don't think that I should have been prescribed it anyway, given some macular degeneration in one eye, and also my leflunomide pamphlet says that they should not be prescribed together, although my then consultant says this is out of date.

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