HYDROXYCHLOROQUINE

[snis]

Hi anyone on this ? I am wary of starting it due to risk of retina damage !

[Hessie5]

Hi - I was on hydroxy with Mtx. It was effective but I too was concerned as my eyesight is not great. Also, now moving to biologic. All these drugs have side effects, don't get too caught up with that. I am on high dose prednisone which also is not great. I have just booked for a eye test - something you must do. Wishing you well. Hessie

[helixhelix]

It is very, very rare especially in the first 5 years.

You are advised to have eye tests yearly, and generally this will pick anything up early enough to stop the drugs.

[FionaVanDieken]

Hiya, have been on this and a few others for a year now and I have had no problems with this drug. I went to the opticians for an eye examination and made them aware of the drugs and the side effects and she told me in her 25 years experience she has never seen damage through these drugs. Try not to worry too much x

[Hidden]

I wouldn’t worry, I have been on it for 25 years and my eyes are fine. My optician says it’s a very rare effect, just make sure you have yearly eye tests and tell the optician you’re taking it. I hope it works for you.

[hatshepsut]

I have been on it for 10 years...so far no problems. I do have regular eye tests

[14bubbles]

Been on max dose coming up for 5 years now, no problems. Make sure you have yearly eye checks and that your optician knows. My optician has told me its very rare, she's never seen it.

[allanah]

Hi I was on it 5 years and no problems. Got a yearly eye check and everything was fine.

X

[VeronicaF]

don't delay, the longer u delay the longer your suffer and more damage done

I done this, for same reasons as you and got damage in my joints, this drug is very safe and very good, only problem for me is I can't have the full does as I have lost too much weight and also its not enough for me

but I love this drug, feel great on it and notice if I haven't taken it

it takes a good 12 weeks to start kicking in, but once it does your feel so much better

so take it!! :O))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

ps

eat nearly all your meal or breakfast, take your tablet and finish rest off then you wont get an upset tummy on them

[BonnieT]

I don’t know if that’s plaquenel (I know that’s not spelled correctly) but I declined it because of the eye problems associated with it. I chose the next best on my doctors list which was methotrexate. It hasn’t made a miracle for me but it’s been around a long time even though it too has consequences. I guess it’s a matter of choice after you’ve looked into all your options. Talk it over with your doctor.

[DoricQuine55]

I am on hydroxy and already attend the eye clinic as i have glaucoma and consultant not in the least worried as I get regular eye checks.

[FionaHerts]

Great drug that worked well for me. Eyesight complications are very rare, but they do happen. I was on the max dose for four years without any eye monitoring from the hospital. Hydroxychloroquine retinopathy was picked up at my annual eye test with digital retinal photo and by comparing pictures from previous photos, so I was lucky it was found.

I know many people take this drug without problem, so I'd say remember the side effects are rare, but do have an annual test to look at the macula at the back of your eyes.

[Staycalmandcarryon]

I have been taking Hydroxychloroquine for two and a half years. Have been in remission for well over a year During which I have reduced from 400mg daily to 200mg to 100mg. Am now taking one 200mg tablet every third day with a view to stopping completely in next 3 months provided remission is maintained. No eye problems. You need to stick with HCQ as it does take a while to work.

[PurpleGeck in reply to Staycalmandcarryon]

@Staycalmandcarryon Yours sounds like the kind of journey I am hoping for! Can I ask, how often you have blood tests? And how frequent were they to begin with? I have suspected early RA and am expecting the rheumatologist to start me on Hydroxy on my next visit. I know I can’t avoid them but I travel a lot, often for several weeks (even months) at a time and am really stressing about how much starting meds will impact on my work and lifestyle! I also realise that I can’t base my treatment pattern on someone else’s but I’m trying to prepare myself for what’s in store! Thanks.

[joycen60 in reply to PurpleGeck]

No Blood Tests are needed for hydroxychloroquine just the eye tests. I was put on this for my first one as I was about to go on holiday. They added sulphalasine when I got back as this needed blood tests every two weeks but now reduced to every three months.

[PurpleGeck in reply to joycen60]

Really!? 😃 You don’t know how encouraging this is! My rheumatologist told me “all my patients start with blood tests every two weeks whatever medication they’re on”. I can deal with that for a few months (and understand why it might be necessary) but giving up my life long term is a depressing thought. I have annual eye checks anyway as I wear contact lenses.

I don’t I’ve got to be patient and try not to second-guess stuff but I can’t help it!

[nomoreheels in reply to PurpleGeck]

I'm sorry to say given you're happy at the thought of not needing drug monitoring blood tests but most Rheumy's do want them once you've finished your fortnightly new DMARD bloods. Yours will tell you if he does. I certainly had them when I was on HCQ, only 3 monthly as I had bloods taken the week before I saw my Consultant each time. Another thing, it can cause a reduction of blood cells, something your Rheumy will want to keep his eye on.

[PurpleGeck in reply to nomoreheels]

Oh well, at least I had my ten minutes of optimism! I'm just too impatient to get my life back on track, lol! I know I shouldn't but I have in my mind that if I'm on 3-monthly blood test by October-ish, it's manageable. Yep, that's probably a stupid thing to hope for...

[Staycalmandcarryon in reply to PurpleGeck]

I don’t have regular blood tests though coincidentally I had a blood test 2 weeks ago for a non -RA related investigation. It came back clear. HCQ seems to work well for a proportion of people, it has for me though as previously stated I had to stick with it. I wish you all the best.

[PurpleGeck in reply to Staycalmandcarryon]

Thanks. It does seem unusual that your bloods weren't more closely monitored at the start. I guess I just have to wait and see...

[nomoreheels]

It was my first DMARD & apart from light sensitivity I did well in it for around a year. I had any eye test prior & regularly at the hospital because of the light sensitivity but nothing of note to report. Retinopathy caused by HCQ really is very rare. The risk increases if you've been taking it at full dose (400mg daily) for 5 years or more. To put it into perspective my Optometrist has had 2 patients in his whole working life (in excess of 40 years) that he's had to refer to an Opthalmologist at hospital & he tests many people's eye daily, less than 20 is a very quiet day.

Just let your Optometrist know you're starting HCQ & annually when you have your repeat test. It's a good DMARD for many, more often chosen when the disease isn't advanced, if it's moderate or lower or there are fewer joints involved. I'm sure you'll be fine but you won't know until you start it. If it's not the one for you then have a talk with your Rheumy, there are options out there such as methotrexate, sulfasalazine or leflunomide but I'm sure he's chosen to recommend HCQ for a reason so do try it.

[snis in reply to nomoreheels]

Thank you for your informative reply .My consultant chose that one as I have already had bad reactions to Metho and Sulf ...I am seeing him next Thurs to have my knee drained again for the 3rd time such pain .Thanking you again onwards and upwards !

[embroy]

You will be fine, I had taken it for 6 months to a year, I think, don't worry the Rhumotogist will ask you have an eye test, hopefully it doesn't. effect the Retina, you have to have the eye test for the 1st, then 5 years etc. I can only see with one eye, but nothing wrong with it,