Subcutaneous

[kittykat68]

Hi does anybody have subcutaneous lupus and is also on mepacrine please,as u can seemim in a skin flare up and the mepacrine is pigmentating my skin x

[Dalilatm]

Hi Kitty!

I've had a similar rash in the past. All over my arms. It's very annoying. I used to wear a hoodie, sweater all the time due this. But then it just comes back randomly, from time to time. I try not to scratch. I don't know why it comes, why it goes. Creams didn't help at all, but bothered instead, so as the song says I just "let it be". I have SLE and I have never taken Mecrapine. However, if you think you're having a flare, it's super important that you contact your specialist. This rash plus other symptoms can be a warning.

Best of luck!

[kittykat68]

Thanks for ur reply and yes I see my consultant every month ,but wot I was asking if any one else was on mepacrine as it's unlicensed in the UK so there is not much info anywhere hence why I'm asking about skin pigmenting as this flare is different to all the rest I never scare and these papas are leaving scars ,ty for ur reply anywayx

[Wendy39]

Hello. Sorry to hear that you are suffering like this. And that this rash is leaving scarring. have SLE and am on Mepacrine. I only started it on 5th June and only take 50mg, three times a week. So far so good for me. Do you have any other symptoms of a flare? How long have you been on the drug? Is the consultant you see soon a dermatologist?

[kittykat68]

Ive been on mepacrine for a year n half and this is the first flare since being on it but im changing immune suppressants im going from methotrexate to azathioprine so the hot weather along with no immune suppressants caused my skin to flare up but its different where i have the red circlesbin the middle of it my skin has pigmented so im not going to have scars as such but where im olivey skin and the mepacrine has darken my skin even more ive got white patch only on ny arms not on my chest or back,my rheumy off sick would u crefit it lol vut i have a great relationship with the whole rheumy team so they have mt pictures and ive just had my tmpt bloods they take 10 days to come back then ill be back on immune suppressants, since being on mepacrine thou i feel so much better in myself im on the same dose i started higher and gradually went down and ive been on this dose about a year it defo is for subacute cutanous thou and not for systemic as this concentrates on ur skin, are u on immune suppressants as well if yes which one pleasex

[Wendy39 in reply to kittykat68]

Yes, I was told it was good for skin. I definitely have SLE though. I'm on 2 x 200mg of Hydroxychloroquine a day and 3g of mycophenolate mofetil. So this was 3rd Lupus drug thrown into the mix. I also take 2 antihistamines a day for my allergies and itchy skin. Have you tried calamine lotion? Good for itchy spots with chicken pox, might be worth a go?

[kittykat68 in reply to Wendy39]

Im on 300 plaquinel too you have to be as its a disease modifiying drug,ive been on methotrexate for 7 years so i asked for a break and ive ended up in a flare but i feel better off of methotrexate so i did a bit if research and thought i want to try it as opposed to methotrexate so its just a weighting game now,im on 8 antihistamines a day they tried me on the fexodenine i think thats wot it was called its the antihistamines tjat u only have to take 2 a day it made me feel so sock and dizzy do im back to 8 priton a day which brings my meds to a round figure of 252 tablets a week nice cocktail lolx

[Wendy39 in reply to kittykat68]

Bless you! 252 a week! I can see why you are flaring, a gap in your immune suppressants whilst you are swapping. Hopefully the new one will work quickly. Could you ask for a short course of steroids to cover the gap in between? I was ill before starting the MMF and it took about 2 months to build from 1g a day to 3g, so Dermy gave me a 5 week course of steroids to help in the meantime. I hope I've helped a little but wish I could do/say more.

[kittykat68]

Ps no the o ly think i can use onmy skin is sanex to wash with and epimax cream for my skin which us over dry and over sensativex

[Wendy39 in reply to kittykat68]

I am careful what I use too. I use sanex for me and my daughter who has dry skin. Take care. I hour you find relief from the rash very soon.

[Wendy39]

guysandstthomas.nhs.uk/reso...

Found this info about mepacrine. It talks about it use for SLE, discoid lupus and SCLE. One of the side effects is a severe rash. Can you see your GP about this before you see your Consultant? Have you had issues like this with other drugs?

Wendy x

[kittykat68]

Hi Wendy thanks for your reply,in on steroid injections so can't have oral steroids at the same time hun and I've been on mepacrine too long for this to be a rash sadly it's lupus flaring my GP is not good with lupus and has previously given me prescription having not checked that I can have then so I only see and correspond with rheumy dep 8th safer that way lolx

[Wendy39 in reply to kittykat68]

I'm with you now.

GPs it seems are hit and miss with lupus patients.

I hope you can make it to 8th without getting worse. If the rash is bothering you, itching etc I can only think of calamine lotion.

Best wishes and let me know how it goes on 8th.

(There doesn't seem to be many people here on mepacrine does there?)

Wendy x

[Wendy39]

How are you kittykat68? x