Mepacrine

[maffwad]

Would be interested to hear of anyones experiences with Mepacrine. I was diagnosed with DLE 4 months ago and my head, face neck and chest has been covered in the rash for that time.

Did a course of preds first and when i was on 30 mg a day things were not to bad but as soon as i came down i felt terrible and my skin got really bad.

Was then put on Hydroxychlorine but that really didn't agree with me and had to come straight off.

I have now been put on Mepacrine which is a result of various doctors looking at me at the royal london hospital.

Have looked at the side effects, how yellow does your skin go???

[tiredmum]

I have to be honest I didn't take the tablets for weeks because I was worried about going yellow too!!!!

I take 50mg mepacrine 3 times a week on top of 400mg hydroxychloroquine per day and after 6 months I still haven't turned yellow!!!

Give it a go, it won't be that bad.

[Hidden]

Hi MEPACRINE A Success story

I have suffered from discoid lupus for years. I took Alexoquine to start with as I was living in Egypt at the time, nothing was explained to me I was just given blood tests, tablets,creams and lotions and told to stay out of the sun.You would think living there would be difficult due to the sun but believe it or not my condition got worse when I returned to the UK. I carried on with the medication I already had until my skin became so bad I did not want to go outside.

I visited my GP and was referred to a dermotologist straight away, it was the best thing I ever did. I have the most lovely, caring doctor you can imagine. She changed my tablets to hydroxchloroquine ( I did not get along with them) and my skin cream to Elocon along with Elecon scalp lotion and Dermovate scalp lotion. She also prescribed me a tinted sunblock that works a treat.

When I told my doctor about the reaction to hydroxchloroquine she changed my tablets to MEPACRINE. My skin is now the best it has ever been, Ok it has turned slightly yellow but for me this is not a side effect, I am no longer the palest person on earth. I follow all the instructions I have been given, applying my skin cream, taking my tablets, I always wear a hat outside, cover up all the time and I wear sunglasses.

I work under flourescent lights so I cover my head.

.

This condition is a pain and I get so fed up when I see people wearing lovely summer clothes and sunbathing but I look on the bright side, I never suffer from the pain of sunburn.

You learn to live with this, it is a life changing condition but if you look after yourself it is manageable.

One thing I would like to ask anyone reading this,

Does being outside in the summer make you very tired? This happens to me and I was wondering if anyone else suffers from this.

Good luck to anyone suffering from this condition, Take care.

[Stewscot]

I live in Scotland, What is 'Summer' ?