Is hydroxychloroquine working?

[phoebe-18]

Hello,

I've been on hydroxychloroquine for almost 6 months for urticarial vasculitis, although on a full dose of 400mg/day for only about 3 1/2 months, and I have yet to feel any improvement. I saw my rheumy last month and he seemed to be hopeful that it was working and I should continue but I am more sceptical.

Initially he said hydroxy or dapsone were possible treatment options and I'm now wondering whether I should switch to dapsone.

Has anyone had a similar experience with hydroxy, that took a long time to start seeing results? Or has anyone taken dapsone successfully for uv? (and if yes what were the side effects like?)

thank you so much for any advice.

[sand120]

Hi! I’ve been on everything!!! Everyone is different how their body reacts to the disease and meds. This medicine is the only thing out there that I have not tried...I’ve even been on some pretty power chemo, not to mention the other harsh meds. So far, nothing has put me into remission. As far as this med goes, I can move a little better, but I still have horrible flares each month. You should already be seeing some sort of improvement by now, even if it is only a very small improvement. Talk to your doctor. But also, think about the side effects from the other meds too. I’m now on 29 different meds...most due the horrible side effects those powerful meds left me with that can’t be reversed. But they are so many great meds that have worked for others! Praying you find a med that will work!! (Without the harsh side effects) Best wishes to you!

[lou1972]

May I ask what symptoms you have with UV?

[artists]

After a lot of years l was diagnosed with uv a few months ago . I started colchicine which made an immediate difference. I still have all the symptoms but a lot less severe. Then hydroxychoroquine for the last three months . I was told that it would be a few months until l notice a difference ,so I’m hoping to feel even better in the future . I don’t seem to have any side effects. I sleep badly but I was always awake due to the pain so it might be habit now I’ll have to wait to see if l settle down . Good luck fingers crossed you will feel better soon .