Mepacrine

[Wolf1]

Hi

Been to see Prof Cruz team again at Guy’s. They are now starting me on mepacrine. I’m a little concerned. Anyone else on it? Thanks

[Happykins]

Hi Wolf, I've been on it for four years.

It's helped quite a lot, I still get flares but am able to do so much more than before.

I've got uctd.

What dose has Prof Cruz started you on? Are you taking anything else?

I believe that you should find some benefit from it fairly quickly, compared with hydroxychloroquine.

Hope the mepacrine helps you x

[Wolf1 in reply to Happykins]

Hi. 100mgs 3times a week. I’m on Mycophenolate and steroids. Prob going to have IV rituximeb in Oct once I’ve had cardio angiogram thanks xx

[Wolf1 in reply to Wolf1]

I was worried about effect on mental health xx

[Happykins in reply to Wolf1]

I started off on 50mg (1/2 tab) daily. Also get 120mg depo medrone steroid injection every 3 months.

My rheumatologist has suggested Mycophenolate but I've been concerned about side-effects - how have you found it?

We agreed that I'd try increasing the mepacrine first, so for the last year I've been taking 50mg then 100 mg on alternate days.

Not sure if it's been of much benefit increasing the dose & I've realised recently that my IBS is much worse on the days when I take the whole tablet.

As to mental health - I used to have crippling anxiety at times.

Happily, within about 2 weeks of starting mepacrine, the anxiety vanished. On occasions when it returns, I've come to recognise that anxiety is the start of a flare for me xx

[Wolf1 in reply to Happykins]

Thanks. Mycophenolate been fine for me- I’m on max dose! Just that steroids have made me go bit loopy. Paranoid etc. I’m just concerned with Mepacrinex thank you you’ve eased my worries xx

[Happykins in reply to Wolf1]

Good hope you get on well with it xx

[Callie]

Hi Happykins. I've also been given Mepacrine, 100mgs alternate days.

I was on a maintenance dose of steroids but l gained a huge amount of weight which was not good for my joints , l have O/A throughout my body, right hip replacement last September. Orthopeadic people were also not very happy about me being on steroids.

Since starting Mepacrine l have felt a little better, but l now have yellow eyes lol, as l wear glasses with a tinted lens you do not notice it so much.

Down side is that my GP will not prescribe mepacrine as it is an unlicensed drug and not on their prescribing list, so l have to let teh Lupus nurse know when l am getting low and they will issue me with a prescription through the post.

I hope that you feel the benefit soon.

[Happykins in reply to Callie]

Hi Callie, the mepacrine has stained my skin slightly, everyone thinks I have a golden tan - even though I've not been able to sunbathe for over 10 years x

[Wolf1]

Yes I’ve been told you can have a yellow tinge!! I’m also back on maintenance dose of steroids- I hate them!! How do you feel mentally being in mepacrine? Xx