Prescribed hydroxychloroquine

[Sunnyseas]

I’ve not been on for a while

After months on amitriptyline for fibromyalgia I’ve just seen a different rheumatologist at my follow up and was diagnosed with inflammatory arthritis/early RA. She prescribed hydroxychloroquine which sounds quite well tolerated. I’m a bit worried about the long term eye and heart side effects, which although uncommon, seem quite serious. Perhaps worth it though to gave controlled symptoms. How have any of you got along with this drug?

[allanah]

Got on fine. The eye test is a precaution for rare eye side effects and is a small yearly check. Thry will take you off if you gave ANY problems. I'd go for it, it's a very helpful drug x good luck !!

[Brychni in reply to allanah]

not had my eye test yet.

[allanah in reply to Brychni]

They only do them yearly x

[sylvi]

Its the only drug i am on thanks to pneumonia and other lung issues. It helps, not a lot but some.xxx

[Caza]

Morning Sunnyseas, I’ve been taking Hydroxchloroquine now for 8yrs. I had a slight rash after taking it for a couple of weeks but it wasn’t a problem & it soon went. My skin is more sun sensitive not a bad thing, no more sitting in the sun without sun cream on. I had my eyes tested before starting the drug & then again every year. After 5 yrs on the drug my consultant wanted me to have an eye test at the hospital. So I’m tested by my own opticians & by the hospital once a year. All’s well.

The pharmacist did give me a different brand of the same drug (cheaper) but it badly affected my stomach so now on my prescription it states the brand that I can take only. The drug works really works well for me & im not taking anything else. I have tried reducing the drug & even a trail without it & both have ended very badly. There’s a risk with all drugs but I believe this is one of the milder ones. Good luck

[Sunnyseas in reply to Caza]

Thanks Caza, that’s very helpful

[Bryu]

I have taken hydroxychloroquine for 4 years as I have inflammatory arthritis /RA and it has been very effective. I have now been able to cut my dose by 50% as it's so well controlled. Took about 4 months to really kick in but no real side effects. A bit of sun sensitivity at first but that's worn off now, Good luck and hope it works as well for you.

[Brychni]

I worry about EVERYTHING but this is fine for me. About to start taking methotrexate too as things are getting worse but will carry on taking hydroxy. the reason for this is that it works to help other drugs, apparently. However, thinking about it there have been some improvements since I started it and the main thing is the fatigue attacks. They were only for a short period of time but I noticed the other day I haven't had that feeling for quite a while - mainly because I felt fluey and achy yesterday!

[Sunnyseas in reply to Brychni]

All the best with mtx, hope you are ok x

[Hidden]

I took it for a while and at the initial eye test the optometrist said he'd never seen any damage done by hydroxychloroquine, but its predecessor, chloroquine, had been very bad for eyes, hence the careful checking.

[Sunnyseas in reply to Hidden]

Thanks Bacharia, that’s reassuring. Love your picture 🙂

[KittyJ]

I’ve been taking hydroxy for over 20 years and have had no problems. A yearly eye test as has already been said keeps an eye on things. My optician has never seen anyone with retinopathy due to hydroxy, it is very rare. It’s one of the milder drugs so I hope it works for you.

[Indersisive71 in reply to KittyJ]

Hi I started taking hydroxychloroque Today twice a day. It doesn't tell you how many hours before each dose

[Sunnyseas in reply to Indersisive71]

Hello Indersidive71 - I take hcq twice a day, with breakfast & evening meal. It was suggested I take it after meals to tolerate it better. So far, so good. I hope it helps you, ss

[Indersisive71 in reply to Sunnyseas]

Thankyou. that would be ideal I looked everywhere on the leaflet and it doesn't say thanks for help

[charisma]

I took it for over two years along with methotrexate. Brain fog was a nuisance fir me, had to note everything eg at Rheumatology appointments, or I’d forget in minutes what was said. Sorry you now have additional diagnosis. Good luck with HCQ.

[Salamanca21]

13 years...no bad effects quite the reverse. Eye test every year for possible negative effects of Hydroxychloroquine.

[Liz018]

Hi I was initially worried but like others have said the side effects are rare . I have been in it for 2 years it’s helped me massively I’m so glad that I did it .

[Poshcards]

Been on it for about 20 years now, just had it doubled up for now too and fine xx

[Sunnyseas in reply to Poshcards]

Hi Poshcards - that’s incredible. Has it controlled ra for all that time?

[Lilmo1]

Hi Sunnyseas

My notice that was received mentioned Amptripilene, I cant add anything to hats been said all ive heard is thats the same mdd that Trump talked about was a cure for Covid-19 which wasn't true.

Sorry I hope you get relief soon, my husband suffers with RA and SA soratic arthritis and suffers terrible pain, but praise be to God he can get a nights sleep.

[Cheriebo]

I have been on it over 10 years!! that is all I am on and my markers were high...I hardly know I have RA just need to get your Eyes checked once a year

[VeronicaF]

I am on it, good drug, no problems on it

[JFlay]

Hi, I've been on it for over a year now. I manage okay with just that and paracetamol if I need it. The HCQ does give me wind, but I can live with that 😂