Mepacrine?? Alternative to Hydroxychoroquine

[KnitSewPurl]

Hi everyone (ladies and men out there) ,Hope your are not too busy and rush preparing for Christmas holidays ✨.

So I have a few questions a bit of run down about yesterday.

Saw eye Consultant yesterday not so good news . Though there showed no toxicity in my eyes there was more thinned lining(which felt more macular built up )of my Left eye which they felt I needed to come off Hydroxychoroquine which they think could be something could be avoided. I know I have used Hydroxychoroquine for over 13years now. Only now seeing some advanced deterioration of the lining of the eye. I have genetic macular on both eyes from my mum non dormant gene. My mum carries both gene. There was some thinning before they were stable now it was advanced I am wondering whether it is actually the current drug that I am on that cause it and not Hydroxychoroquine as I just started on Alendronic Acid on my 2nd month . Looking at reports and studies it does shows that Alendronic does effect the eyes to the extent to Uveitis, inflammation and so on. If someone who has already had a eye condition to what extent would this damage be.

I know I did not think of this until I got home and did some further research this early part of the morning as it was troubling me. So until I actually looked it up.

Just wondering how many of you are on Alendronic Acid if so do you have constant pain in your eye and constant grit in your eye. No.1

The other thing is , do you get upset tummy gripey like full of acid tummy when taking it about half hour of after taking it. No.2.

Also if any of you are on alternatives to Hydroxychoroquine like Mepacrine if so are you still on Hydroxychoroquine or are you on a combination of Mepa and another drug?

These are what I need to find out if anyone has any issues or answers would be most grateful.

Thank you kind ladies and men

[bathouse]

Hi

I’m on hydroxychloroquine 400 mg daily and mepacrine 50 mg daily

[KnitSewPurl in reply to bathouse]

Any side effects or problems taking both of them together? How long have you been taking them?

How effective have they been for you in controlling and keeping you stable ie, flare ups and pain levels ?

[bathouse in reply to KnitSewPurl]

Hi

I’ve been on both mepacrine and hydroxychloroquine for some time now, definitely over a year, probably 2, time flies!

Mepacrine was a game changer for me, literally! Helped with fatigue, sacroilitis and joint pain.

Only side effects were a slight yellowing of the whites of my eyes and a little tint to my skin which I actually like.

I can’t drink any alcohol on mepacrine, it causes flushing (I only drink on very special occasions/meals so not a big deal)

I developed lupus photosensitivity and was advised to up my dose of mepacrine to 100mg daily, I’m on 50 mg daily but I did not feel myself at all, difficult to explain, I reduced my dose back to 50 mg and felt back to my old self

The last few months I’ve flared again, sacroilitis and fatigue, so a little disappointing, I can’t up my hydroxychloroquine any more or the mepacrine, not sure of next steps

[Choccy8]

I was prescribed Mepacrine after a flare after stopping Hydroxychloroquine as it was affecting my mental health. It was first suggested by a private rheumatologist and then I asked my NHS rheumatologist about it. I'm meant to take 50mg a day but for some reason I'm bad at remembering to take it, so it's probably more like 3 times a week at the moment. I think it helps and I'm not aware of any side effects. I'm also taking prednisolone and Mycophenolate.