Mepacrine

[Aurali]

Hi all.... Does anyone take mepacrine? I have been prescribed this after having really bad constant headaches on hydroxychloroquine.

How do you find it? Xx

[Pussbella]

Yes,I do. I take it as well as hydroxychloroquine. This to avoid going on immune suppressants partly because I also have a diagnosed partial immune deficiency as well as autoimmunity.

Initially I started at a very low dose of 50 mg three times per week. It was then upped to 100 mg three times per week. I take 300 mg of hydroxychloroquine which is the maximum dose for my weight.

Mepacrine has definitely helped with both pain and fatigue.

I have to pay for the Mepacrine although I get hydroxy free on NHS. It is expensive but definitely worth it for me.

I have not turned yellow - at much higher doses this can be one of the side effects apparently.

Hope this helps.

Bw

Pb.

[Aurali in reply to Pussbella]

Yes that's a big help, thank you 😊I've just started on 50mg 3 times a week for a month, then every day for 3 months.

The side effects sound scary..... yellow skin & black eyes and nails!!!

This has helped me feel more positive xx

[Happykins]

Hi Aurali,

I've been taking it for uctd (was allergic to hydroxychloroquine) since 2015.

50mg /100mg alternate days.

No problems with it, usually I'm very pale-skinned but now have a slight 'golden' tan.

No black discolouration on the roof of my mouth or eyes but both big toe nails do have a blue patch which my gp thought was bruising, don't think it is as it's been in exactly the same spot for a few years, also very slight blue mark on index nails but honestly, that's nothing.

Unlike pussbella, I get mine prescribed on nhs.

if you do a search for mepacrine you should be able to find a post where I replied, saying how I get it from Boots, I'll try to put up the link.

Hope the mepacrine helps you. xx

[Happykins]

Here's the link to the earlier post:

healthunlocked.com/lupusuk/...

[Happykins]

This is how I get mine:

It has helped with joint pain and skin issues but if I'm honest, I think I'm getting more pain relief from a private prescription of ldn - low dose naltrexone.

Happykins

22 days ago

Hi, if anyone is having problems with the supply of mepacrine - I used to get mine from Boots, supplied by BCM Limited Registered 2741673, D10, Thane Road, Nottingham, England, NG90 2PR but the supply was halted last year due to a batch containing possible particles of glass and rubber.

This was the batch I'd been using for at least 6 months.

BCM were kind enough to give me the details of another supplier in the UK:

Ascot Pharma Ltd

Address: Unit 1, Olds Approach, Tolpits Lane, Watford WD18 9TD

Telephone: [phone]

Fax: [phone]

Email: [e-mail]

24hr Emergency Number: [phone]

At first, I could only get these through independent local chemist but for the last couple of months this brand has been obtainable from Boots.

Hope this helps x

[Aurali in reply to Happykins]

A slight glow of tan is definitely something I can live with 😁 My mind has certainly been put at rest, thank you!

I think my rheumy has to continue to prescribe, and Boots actually had some in stock there luckily. They said if I was going to be on them going forward they will make sure they have them in.

Thank you so much for your help xx

[Littleandperfect]

Hi Aurali..Yes I take Mepacrine and have no trouble at all with it...

it helped me get off wretched steroids after a really bad flare..

I take hydroxy 200 too .. and 10 mls amitriptaline.

Have a good day 🌞I’m struggling with trying to garden without getting any skin in the current sunshine ☀️!

[Littleandperfect]

Oh and by the way.. I live in Nottingham so no trouble obtaining it as Boots head office is based here .. my Dermatologist prescribed it for me on the NHS

[Aurali in reply to Littleandperfect]

Thank you so much, I feel so much better after all the help on here, such a great community 😀The sunshine is so lovely but also a big pain for us 🌞😒

I've only just started with mepacrine this week so will see how I get on.

My local boots have said if I stay on them they will keep them in for me 😊

Have a lovely day 😊🌞 xx

[Onyameba]

Hi, It’s my daughter who has lupus (over ten years now). She has been on Hydroxychloroquine, for all of that time combined with steroids. For the last year and a half after having her baby she has been in a continuous flare, so her doctors are thinking of changing that . Sorry I can’t be of more help. X

[Aurali]

I hope your daughter gets the help she needs and starts to feel better.It must be so hard with a baby too xx

[Onyameba]

Thank you, take care.