Interesting news about evaluating effectiveness of hydroxychloroquine

[Barnclown]

This link might be useful to someone else!

medpagetoday.com/Rheumatolo...

[Paloma25]

Thanks. I found it very helpful for learning about what contributes to the side-effects, too.

[farmerfester]

I was taking hydroxychloroquine for nearly 20 years stopped taking it about 8 weeks ago due to eye damage and dont notice a jot off difference be careful g

[Roanna in reply to farmerfester]

I was on it for 10 years and after 1 week I got joint pain, I was trying to see if anything would happen without upping my imuran like the Dr. recommended, like if it really worked and I got my answer. I also noticed that I slept better. My eyes are still wonky though, never seemed to improve that side of it. I will find out for sure when I see the eye specialist in October to do the follow up. I've been off now for 3months and my lupus is almost stable again, as well as it can be. Wasn't sure where you were going with your statement Though. I hope your still doing ok.

[Barnclown in reply to Roanna]

roanna: hope you'll let us know how you get on!

[Barnclown in reply to farmerfester]

farmfester: hope the eye damage can be treated and improve? v much feeling for you...the risk/benefit equation is so tricky....

[yakamalayo]

It's interesting although I struggled to understand it and it didn't seem to reach any conclusions but I guess that's probably true of loads of studies. Did anyone get any understanding of useful conclusions?

[Barnclown in reply to yakamalayo]

I hope bigger brains than mine reply to your question!

I attend a dedicated lupus & vasculitis rheumatology clinic. In the past year, our specialist lupus nurse has written articles about current research re hydroxy for both the Lupus UK mag & our local support group newsletter. My impression is that so much research is actively underway right now, re why & how hydroxy is effective, that clearer conclusions are only gradually coming together....but that at the mo the risk/benefit ratio is weighted heavily towards benefit, even re long term hydroxy-taking....but I think we'll encounter quite a bit more that we struggle to understand before truly clear, concise conclusions are reached. At the mo, I'm only bold enough to suggest that the balance of research seems to indicate hydroxy really does help + taking it long term is worth the known risks so long as our general condition is taken into account and reassessed at regular intervals + we're closely monitored for side effects.

E.g. I'd been on daily 400mg hydroxy for nearly 4 years, with real benefits, when I was taken off it while immunology investigated problems with my bone marrow blood manufacturing function. For 4 months all I took was the 1000mg myco cellcept I'd been on for a year. During that hydroxy hiatus, I kept a close eye on my multisystem symptoms: all sorts increased enough to significantly affect my quality of life. Recently immunology began to draw conclusions which encouraged rheumatology to allow me back on a 1/2 dose of 200mg hydroxy daily....I immediately felt general improvement, although some symptoms have so far only barely responded. I go to our NHS eye clinic for my annual check up thus month...hoping they'll give me the ok to continue hydroxy for at least 1 more year....