Has anyone been on Hydroxychloroquine? - Behçet's UK

Behçet's UK

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Has anyone been on Hydroxychloroquine?

Dezie profile image
6 Replies

Hi

Have just seen my doctor and he wants me to start taking Hydroxycloroquine, is anyone taking this or has been on this drug? What's your thought on it!

Peace and love x

6 Replies
dizzy2 profile image
dizzy2

I have taken this med for about 4 years with no side effects. Best taken with food, to avoid nausea. You need a yearly eye test as rarely it can affect the retina, usually after years on it.

Dezie profile image
Dezie in reply to dizzy2

Thank you.

Do you find it stops you having flare ups? im starting with 200mg a day and increasing to 200mg 2 times a day after a month.

dizzy2 profile image
dizzy2

I was prescribed it for SLE and inflammatory arthritis, I have not been diagnosed with Behcets. It took a few months to kick in, it has helped with the fatigue, somewhat and my skin rashes. However I also take Azathiaprione to help keep things under control.

Dezie profile image
Dezie in reply to dizzy2

Thank you for your help.

Need to give it a few months and see how i get on!

x

I was prescribed it about three and a half years ago before my Bechet's diagnosis. The rheumatologist I saw at that time thought that I either had SLE lupus or another connective tissue disease, but never even brought up the name "Behcet's" to us at all. I had more relevant symptoms to Behcet's than to Lupus, but I don't think they even know what it is. They started me on Sulfasalazine (can't remember the exact dose), but I do know that it didn't help me at all. I actually started getting worsening skin rashes and more problems with the sun and artificial lighting. After I was finally given the proper diagnosis of Bechet's, my new rheumatologist said that Sulfasalazine can actually worsen Behcet's symptoms... but we are all different and have our own unique experiences with meds. I'm not too sure if my doctor really knows if it is ok or not with Bechet's because he doesn't know how to really treat it. I'm also a very stubborn case because nothing has really helped settle things down, not even Remicade or the steroids.

Eliciasmom profile image
Eliciasmom in reply to behcetshurtsbeyondwords

I just read your post, I feel for you, how are you doing now?

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