Mepacrine

[Flows]

Hi all im back here again 🙄 long story short im taking mepcarine 100mg for five days aweek started in mrach after a flare. So been taking 4 four months. This sounds stupid but i cant work out if im going yellow or caught the sun even though i wear factor 50 all year round and stay in the shade as far as possible. Ive only really kinda noticed on face no wear else on my body. I guess my question is does mepacrine only affect the colpur on yr face or it is all over. Im so fed up of trying things and then having to deall with something else it just gets me down any experiences would really help. Thank you x

[SF1000]

Hi Flows

I have been taking mepacrine every day for some years. I also have a yellowish tinge to my skin. It is a little noticeable on my face but also elsewhere. I don’t mind as it does look like I have a bit of a tan all year even though I never expose my skin to the sun. The colour hasn’t really changed over the years - it has stayed the same yellow not deepened.

The other thing you may notice is black patches in nails and a black staining of the palate. None of this has made me want to stop the meds as they are helping and tbh I don’t even notice it any more and noone ever comments. Good luck x

[Flows in reply to SF1000]

Hi thank you for taking the time to respond its appreciated. X

[Flow_47]

Hi Flows,Yes mepacrine does make you yellow. Face arms neck mainly for me. I have been on it for 7 years.

Take care.

Chris 🌸

[Flows in reply to Flow_47]

Thank you chris it helps to reach out to people who understand x

[bathouse]

I have a slight Yellow tint which I quite like as I'm normally a pale Red headThe whites of my eyes have Yellowed too but it's not too bad, otherwise no other side effects x

[Flows in reply to bathouse]

Hey bathhouse. Thank you for responding. I think im only gonna really be able to tell once winter arrives as crazy as that mau sound. Keep well

[Happykins]

Hi Flows, I've been on mepacrine for nearly 10 years 100/50mg alternate days and yes, I've got the mepacrine sun tan.

Mainly face, neck & arms but am more' golden' all over.

Urine not changed colour but my nails are yellowish also both big toe nails & middle fingers are quite blue.

Hope the mepacrine helps you, let us know how you get on xx

[Paprika60 in reply to Happykins]

I would like to ask if you are taking Mepacrine instead of Hydroxychloquine. I have been on Hydroxy over 11 years now and in my mid 60s. My vision is slowly getting blurry but the cornea tests have been all fine. I have been asking my rheumy to let me switch to Mepacrine as I am getting very concerned about my eye health. My Rheumy doesn't want to do this saying that Mepacrine has a lot more possible side effects and also requires more regular blood tests done. I have started my illness with Urticarial Vasculitis which affects mainly skin. And yet Mepacrine was never ever mentioned back over twenty years ago. I have since developed lupus as UV was never successfully controlled despite constant use of steroids and other immune suppressants. I don't think I would mind yellow skin at all...much better choice than possible permanent damage to my eyes as I am a painter! Thank you.

[Happykins in reply to Paprika60]

Hi Paprika, yes I was allergic to hydroxychloroquine.

I'm 62 & honestly have had no real side effects from the mepacrine.

It has really helped my skin too. Apparently not good for psoriasis, however, mine has cleared up since starting it. Tastes pretty horrible but that's a small price to pay

I have been assured by opticians that it doesn't pose a threat to the eyes. I'm due to see opthalmolgy at local hospital in September (to check for Sjögrens) & will ask them about long term effects.

I'm on long term lose -dose prednisolone .

Hope your rheumy lets you try it, it is off-license but hopefully that won't make a diiference for you x

[Flows in reply to Paprika60]

Hi yes I swapped to mepacrine as hydro really affected my pigmentation. My bloods are checked regularly as I'm on mycophenolate also. The mepacrine is defo helping with swelling and joint pain not so sure about the tiredness but is helping a bit but I can manage that. I totally get the eyesight which was why I wasn't really happy to take it in the first place. Approach the consultant again, at the end of the day it's you that has to live in your body. Take care x

[Paprika60]

Thank you very much for your response. I will try for the fourth time! I won't give up. It may not work as well for me but I feel I ought to give it a go. I tried to reduce Hydro to every other day (my own effort) when my request was rejected. It was mainly the joint pain so it is good to read that mepacrine works for joints and swelling. THANK YOU!! X

[Flows in reply to Paprika60]

No worries it good to have people's experience with lupus we need each. Take care x