Mepacrine for Lupus Joint Pain?: I’ve just been... - LUPUS UK

LUPUS UK

30,215 members26,791 posts

Mepacrine for Lupus Joint Pain?

ShannonB profile image
15 Replies

I’ve just been given a prescription for mepacrine to add to my drug cocktail of hydroxycloriquine, mycophenolate, prednisolone and flecainide. The goal is to get a joint pain flare under control. Anyone have any success with this?

15 Replies
Tiggywoos profile image
Tiggywoos

Hi Shannon I’m a bit confused 🤷‍♀️ 🙂.. I thought that was hydroxychloroquinine? X

ShannonB profile image
ShannonB in reply to Tiggywoos

It’s another anti-malarial that apparently is sometimes taken alongside hydroxycloriquine although my pharmacy called to say they can’t get it from their suppliers?!

Tiggywoos profile image
Tiggywoos in reply to ShannonB

Ooh that’s interesting ... I expect someone else will post to say they take it

Frosty1960 profile image
Frosty1960 in reply to ShannonB

Its an unlicensed drug apparently although was told used to be used in the services, can be hassle to get as has to be ordered in usually try another pharmacy as should be able to get it.

Happykins profile image
Happykins

Hi Shannon,

I have uctd and was allergic to hydroxycloriquine, so have been taking mepacrine daily for 6 years.

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.

Hope the mepacrine helps you xx

ShannonB profile image
ShannonB in reply to Happykins

Thank you - this is really helpful to hear!

tiredmum profile image
tiredmum

Hi there, I take Mepacrine along with hydroxy and mmf. I find it really helps. I have to get my tablets from the hospital pharmacy and if I miss a week whilst waiting for a new prescription I really notice the difference in the way I feel. Hopefully they will help you too x

ShannonB profile image
ShannonB

Oh that’s great to hear. Thank you for replying ❤️🤞

Happykins profile image
Happykins

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: 01923 711 971

Fax: 01923 710 388

Email: specials@ascotpharma.com

24hr Emergency Number: +44 7952 992 395

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

ShannonB profile image
ShannonB in reply to Happykins

This is massively helpful because I haven’t been able to source it yet. Thank you!

Chicky12 profile image
Chicky12

Hi Shannon, I was on prednisolone for ITP in my teens and then again for a massive flare in my 20’s. It did the trick, however has left me borderline osteoporotic, so I have been on HRT since 1995. Thankfully, I don’t suffer from joint issues so haven’t been on the cocktail you have described.

ShannonB profile image
ShannonB in reply to Chicky12

Thank you chicky12 - hope everything is under control now

Frosty1960 profile image
Frosty1960

Hi Shannon, I used to take mepacrin it was great for me for years worked really well. I used to have problems with hydrochloride and was put on it instead and it was night and day better. The downside is it has horrible taste I used to take a small drink keep it in my mouth and tilt head back drop tablet into mouth and swallow straight away then take another drink to wash it right down worth it though as was very effective. Unfortunately not as effective for me now but would recommend to anyone, hope it helps you.

ShannonB profile image
ShannonB in reply to Frosty1960

Thank you for the reply and the advice re the taste! Sorry it's not as effective now, hope you are finding something else to manage your symptoms.

Frosty1960 profile image
Frosty1960

Thanks currently on 400mg of hydrochloride daily helps a bit but i suffer from photosensitivity now pretty much on permanent lockdown. Haven't actually been seen at all since covid started hopefully the clinics up and running again soon.

You may also like...