hi just wondered if there is anyone on the drug hydroroxychloriquin (plaquil) im not sure if spellings are correct

[fruitpastle]

I would like to know how it reacts with different people. iv been told id benefit from using it but I am afraid to start it because of the side effects with ur eyes please advice ta

[adleybra]

I have been using plaquenil for 18 months, 200mg once per day. Even on this low dose I have had considerable benefit. I check with the eye specialist 6 monthly. At this low dose it is ulikely to cause toxicity they tell me. The intense fatigue has lessened and in general I am managing much better. I have been unaware of side effects. Everyone is different though!

[overnighthearingloss]

Everything with lupus is a balancing act. Because of known potential problems with eyes, and possibly ears, it is advisable to at least be aware of the condition of both before starting it. Then you at least have a reference point.

It didnt seem to agree with me, even at a low dose. But others do benefit, and its important to control flares as much as possible in whatever way is right for you.

[Joshua3]

Hi I'm on that drug for sjogrin syndrome if you go to the optition regular you will be ok

Iv been on it for a number of years now . Hope this helps

[Hidden]

Hi,

I've been on hydroxychloroquine for a few years and just recently had my dose doubled to the max for my body weight. I've never had any side effects but it is managing hold back my SSd pretty well I would have regular annual eye check ups (now it's the max dose) but I honestly think it's a very safe drug. Definitely worth trying to see if you gain any benefit and my rheumatologist when I started it said all of his patients have tolerated it very well, which was comforting good luck

[Lady-Florence]

I have been on hydroxychloroquine for some 15 years, having been on low dose steroids for almost 20 years prior to that. I tolerate it well and it has helped to stabilise things somewhat. Yes, there are side effects but these have to be balanced with the benefits. I have slight loss in visual field but this is monitored annually so cannot be too great a concern to my optician. Considering I remain mobile, despite my other complications, have brought up two children and held down a demanding job (now retired), I consider the risks/side effects to be worth taking. Go for it. Be monitored closely. Enjoy a better quality of life x

[Hidden]

Hi. The risks to eyes are minimal - as long as you see the optician yearly the side effect to eyes is extremely rare - especially for the first five years and if your rheumatologist and GP monitor your dose in relation to your body weight. It was a really effective drug for my RA symptoms but unfortunately my skin just couldn't tolerate it so I take methotrexate now instead. Best wishes,

Twitchy

[RosemerryVenet]

I have just finished my first month with this medication and have had no problems.

[graygirl1]

I have not taken this medication so the only advice I can give is, if in doubt, go back to your doctor and ask for more information and some reassurance. If you decide to take it, monitor it's effects report to your doctor.

Jot down all the questions you need explained before you go to see your doctor. I am very forgetful so I always have a long list when I visit my doctor.

Good luck!

[Jensue]

I had eye problems to begin with so the consultant wouldn't allow me to use it so he put me on Methotrexate and that has made a big difference to me.

They do monitor you closely while taking these kinds of drugs.

[KathleenMary]

I have taken for nearly twenty years with no ill effects

[Riverrat]

I was on Plaquenil for almost 10 years. No eye problems, my eye Dr. did specialized testing yearly but also told me she had never seen any eye damage on any of her pts. taking it. I did get "The Rash" and had to stop taking it. The rash did not itch, it was just there. Everyone is different and you won't know till YOU try it.

[lupie-Cathy]

Hi I've been on Plaquenil for around 5-6 years and have no problems with it. I have my eyes tested yearly and so far no reaction, there is some evidence that that plaquenil should be given according to weight so if you are very petite and not very tall they suggest you shouldn't take more than 200mgs a day and if you're like me fat and tall then you can have 400mgs a day which is the dose I'm on, I tried coming down to 200mgs but the pains and everything flare up again within a few days so had to go back up! Do some research into the latest research and make up your mind but it does help slow the progression on the illnesses. I hope this helps xx

[Hidden in reply to lupie-Cathy]

or if you're small but very dense with muscle, like me (400mg and not tall or fat! just heavy

[Crestgirl]

Had to discontinue Plaquenil after few years, d/t retinal probs. Arrange to have reg eye checkups!