Hydroxychloroquine side effects

Posted by jonesc @jonesc, Jan 19, 2025

Hi! My name is Candy and I’m looking for some pros and cons of taking hydroxychloroquine. My rheumatologist gave me a paper explaining a ton of very scary side effects and honestly, I’m afraid to start it. Does anyone have any experience starting out treatment with this drug and do the benefits outweigh the side effects.

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Profile picture for reets70 @reets70

I have been taking hydroxychloroquine for 20 years and have absolutely no side effects. This medication helped me immediately and continues to help with a vasculitis condition. Regular eye exams are critical to assessing this drug over time. My eyesight is fine still, and I’m 84 years old!

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this drug seems to me to be attached politically. it's hard to get what you need. I would like to use it. how many mgs are you taking for 20 years?

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I have been taking hydroxychlorequine for at least a year. At first I was on a dose of two 100 mg(?) per day. My main side effect was horrific, gorey nightmares. I went down to one tablet per day and the nightmares went away. I noticed an improvement in my dry mouth almost right away which is why I persisted. The main symptom I am dealing with is dry eye. I am now on Imuran along with the hydroxychorequine and seem to be stabilizing, although I will probably never see out of my left eye again.

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Profile picture for seniormed @seniormed

The visual side effects can be avoided by regular
follow up testing with your ophthalmologist and
tracking the the cumulative dose to limit it over time.
A baseline eye exam and blood testing at intervals
prevents most ill effects while the drug is administered to control autoimmune diseases.

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@seniormed blood testing ??

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anyone hear about hydroxy and hair loss ??

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I’ve been taking it for years with no side effects for my Psoriatic Arthritis. Had to go off for an organ transplant and massive doses of prednisone. So happy to be back on it again now that prednisone is weaned off.

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One of the biggest concern for me about taking hydroxychloroquine, especially long term, is that it can affect the retina. Due to other eye problems I have, my eye doctor did not want me to take it.

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Profile picture for lisanell @lisanell

One of the biggest concern for me about taking hydroxychloroquine, especially long term, is that it can affect the retina. Due to other eye problems I have, my eye doctor did not want me to take it.

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@lisanell I took myself off it a couple of months ago , now the doc wants my eye doc to do a special test if its ok im to go back on it but while I am sooo noticing a difference pain wise , the risk of eye issues is not something I want to mess with.

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Profile picture for kforrest @kforrest

this drug seems to me to be attached politically. it's hard to get what you need. I would like to use it. how many mgs are you taking for 20 years?

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@kforrest I’ve been taking one 200 mg pill once. Day for 20 years, and before that, 2 pills a day for five years, and I have never had one day of bad side effects. I have had very few break thru episodes of erythema nodosum in all that time, but I don’t think it has any effect on other autoimmune issues for me.

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The big scary thing about HCQ and eyes is that once the damage starts it can continue EVEN IF YOU STOP TAKING THE DRUG. It's very rare, but it is documented.

On no account allow them to put you on a course greater than 5mg per kilo of your bodyweight per day, that's the maximum safe dose for eyes. It is FDA and NHS advice.

Damage seen on a scan is permanent, it can't be fixed. What happens first is loss of saturation in red and green vision, and that can fix itself.

Note I'm a VERY rare case but I've got eye problems already. So when I began to get serious hyperpigmentation right round my eye sockets at 10 weeks I started testing my red vision with a double foolscap (A3) sheet of bright red card.

At 12 weeks the colour in the centre for my worse eye, my right one, began to look less red than the rest. A week later my left eye followed and I stopped taking it.

If you have issues with your eyes already, I wouldn't touch the stuff, there are other drugs. IMO, they prescribe this one because it's very cheap and far too easy,

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I had blurred vision slightly better since I stopped but not back to what it was , specialist is pushing to go back on it if tests ok but Im not . though I know I need something this pain n such wow. humira I read can be linked to cancer , Ive had breast cancer dont want that again . what else is there?? cant take luflonamide , or methotrexate ( liver doesnt like them).

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