Hydroxychloroquine

[jackjack2]

Seen my Rheumy today and defo have Lupus, he wants me to think about whether I should take Hydroxychloroquine, given me a leaflet to read and have to let him know if I want to take it, Does anyone have any advice re this medication please

[Rhee]

Hi did your rheumy recommend anything else other then hydroxychloriquine? Shouldnt your rheumy tell you whether you should go on it rather then ask you if you want to be on it. I am currently on them but i feel they dont do much for me. Get very dry eyes if anything!

They may be brill for you though, each individual reacts to medication differently. Hope that helps.

[teaparty in reply to Rhee]

I take it it was a small help but now I take it along with other medication. but everyone is different it might be the right one for you. You dont know until you try it.

[jackjack2 in reply to Rhee]

Hi, no he didn't recommend anything else. I have seen so many specialist since March because I had a stroke and that's when I was diagnosed. I am being referred to Dr Hughes at St Thomas's also. I do take alot of other medication for depression, asthma, IBS, and painkillers, aspirin. I guess I will have to try it and see how I get on. Thanks for the reply x

[lucyloo023]

I've been on hydroxy for two years now. Took about two months for me to see any benefits but main one is I'm not so tired which is great. Slightly upset tummy to begin with but now no problems at all. I take it along with cellcept and steroids and it certainly seems to help x

[jackjack2 in reply to lucyloo023]

Many thanks for reply x

[fabwheelie]

I think it's worth a try. I've been on hydroxychloriquine for just over 10 years it does seem to help to some extent with the fatigue.I take 200 mg - initially that was a daily dose but to help prevent any possible eye complications for last few years my dose has been 200 mg 5 days a week. I think hydroxy also is an anti-inflammatory so taking it can mean avoiding steroids to keep lupus under control (I still don't need steroids - just take hydroxy and pain killers).

If you go on it, as a precaution that it is not having adverse effects on your eyes (in past high doses were linked to eye problems) you will be asked to check your eyes with an amsler grid - I have to see optician anyway so they do that for me, but you can easily do the test yourself - en.wikipedia.org/wiki/Amsle..., amd.org/living-with-amd/res...

[esky]

Hi

I am new here, but wanted to give a little feedback. I was diagnosed with lupus in April this year with also alot of other problems. I have been on Hydroxy since then. I personally have had no benefit from it, but only because they are unable to control my lupus. Hence i have had blood work done to start Methotrexate.

There are plenty of people who have had a good response to Hydroxy, especially with fatigue improvements. The only thing I can suggest is that everyone is different so you wont know really unless you try. Its your choice.

I was advised however to get an eye test before i took it - and make sure i went yearly to make sure that there are no changes.

Remember that if you do decide to take it, you are doing it to try to help yourself.

I wish you all the best x

[Ralphie55]

I've just started on hydroxychloroquine so it's too early to say if its helping. I've read a lot of good things about it though and I am quite positive. I'm desperately hoping for a big improvement by the end of the year as I'm told it takes 3-6 months to show any response. I'm to be a grandma in November and at the moment I'm no good to anyone like this. Got no energy or get up n. go. No sleep pattern. Aches and pains everywhere and I fed up most of the time. Want to be well so badly but getting nowhere. Bad day today folks x

[Simmer]

I took hydroxychloroquine for 8 weeks and have now had to come off them because of serious side effects. It made me hypersensitive to sound, smells and bright light, numbness in my face and really bad headaches. I've heard it works for a lot of people but it was poisoning me my GP said. Worth a try because it is the one that doesn't mess your body up as much. On the plus side it did help with joint inflammation and tiredness

[DonnyJM]

Just to say I am about to start Hydrochloroquinine as soon as my Rheumy letter comes through to take to my GP. I will give it a good go and keep an eye out for any of the problems mentioned but it is great to have the not of others both positive and negative. It really helps so keep the comments coming please.

[Djlr]

Very good & usually 1st defense to fighting Lupus

Stay within 2011 new guidelines

"Based on Height not Weight"

See:

lupus.org/resources/protect...

Women Guidelines:

5.7 in 400 mg

5.01/2 - 5.6 1/2 - 300 mg

Less than 5 ft - 200 mg

And see ophthalmologist once a year- peripheral vision tests

Good choice - pretty non-invasive in body💜💜💜