Hydroxychloroquine serious side effects?

[Lupus1976]

I was put on Hydroxychloroquine and within 5 days my body was so painful I could hardly walk. Extreme stiffness which gradually eased throughout day but still very painful. I was then told to stop immediately.

few weeks later I was told to try again but half the dose and I’m 3 days in and now my hand and wrist are extremely painful.

has anyone experienced these side effects? What did you do?

[JCZW]

Hi Newlupus76

Sorry to hear how you reacted to hydroxychloroquine.

The only thing I can say is I was on 200mg of hydroxychloroquine for 3 years no problem.

Then the rheumatologist increased it to 400mg I was in so much pain and rang the help line for lupus I was told to stop it immediately.

The rheumatologist rang me and said sometimes you can get a bad reaction from hydroxychloroquine.

So I would suggest you contact them again.

Don't know if any of this helps you.

[Lupus1976 in reply to JCZW]

Yes that does help as I felt I was the only one reacting that way. Thanks

[MillyG133]

It's such an awful feeling! I managed 6 weeks like that. I thought I was going to end up.bed bound. The registrar didn't pick up on it, so I ended up on it another 10 days. I managed to crawl into the doctors to see my own doc. He immediately called the hospital to speak with rheumatology. I had to stop immediately and they took a ton of bloods off me. That was on Weds this week. This morning I got the all clear! Woohoo 💕 Sorry, I meant to mention I had my dose doubled. I couldn't tolerate the extra 200mg. I have been on 200mg for 6 months without any problems. I also get steroid injections for pain relief every 3 months. I really hope you can build up a tolerance to the HDCQ or they find something that helps you. Take care x

[Lupus1976 in reply to MillyG133]

That sounds like me. My entire body was agony. Almost a painful stiffness feeling

[Jerg]

I been on this since 2015 when I was diagnosed, for the first 2 days I felt worse then after I started to feel better. The pain in my shoulders and legs were unbearable to the state I had the bath removed for a wet room as I could not lift my arms or legs to get in or climb the stairs. I am now on Methroxiate and folic acid as well now

I hope it helps

[Lupus1976 in reply to Jerg]

My rheumatologist said he hadn’t known side effects like that but I knew surely others had felt it

[Love2fish2]

I’m so sorry to hear you’re not doing well with hydro. I’m not sure if you’re aware that this medication is used primarily for treating malaria. That being said I have been on it for 12 years without any noticeable issues. I started on 200mg and now I take 400mg. I have a friend that just couldn’t take it. Unfortunately there aren’t many better options for us but there are options. Speak to your Rheumatologist. 🤍🤍

[Lupus1976 in reply to Love2fish2]

He said there is no alternative but I’m also to take Azathioprine which I had to start after I have tried to settle into the hydro drug first

[Love2fish2]

I hope 🤞🏾 you’re able to tolerate it with time.