What is your experience of Dapsone?

[FunkyMumma]

After 14 years of being on Hydroxychloroquine/Mepacrine, I arrived at a new Dermatologists Clinic only to be told that ''they don't work if you are a smoker!''. What a waste of tablets for over a decade! He now wants to put me on Dapsone - but has warned it could make me very ill! Has anyone had any negative experiences with Dapsone please. He said the other options are more likely to make me vulnerable to cancer. I think I need to see a Vet sharpish!

[tintin49]

well the hydr stuff has given me a massive flare and i dont trust any of the drugs in fact i dont trust that any of the doctors really know how to treat lupus its pot luck..

[FunkyMumma in reply to tintin49]

Exactly how I feel x

[MandieR]

wow what a choice to be given!!! NOT

I have been taking dapson for the last 8 years to treat dermititis herpetiformis, as a result of having caeliacs disease. The only side effect is that IF i run out then my skin ulcerates much more rapidly than before i started taking them xx

[HermioneG]

I am sorry about nothing helping your SCLE, which is what I have had for getting on 40 years.

I tried Dapsone many years ago. It didn't help and in fact I had to stop taking it because it caused a form of anemia. Luckily the HCQ/ Mepacrine combo is near miraculous for me. If I stop my meds it all gradually comes back again but my joints are better than they were 20 years ago.I find the Mepacrine energising and mood enhancing too. At one time I also took a small dose of Imuran/azathioprine.

I have read that smoking makes the anti -malarials less effective but never that it stops them working. I'd be very reluctant to stop them altogether because of all the wonderful side effects they have, including slightly reducing photosensitivity. Maybe they haven't worked so much as they might have but that's not to say things couldn't have been even worse or will be without them.

Dr D' Cruz asked me if I wanted to try Cellcept when I went out of remission because I had had problems remembering to take my usual meds during a long time time of great stress. I haven't seen Dr Fenton but I had to fight with another newish doc to get back on the full dose of Mepacrine because they don't seem keen on people taking 100mgs a day, although Dr D Cruz wasn't worried.

Dapsone must help some people or they wouldn't try it. You'll be tested for the blood and liver effects. We react differently to meds in every way. Maybe it will help you - you can but try it.

Yes, sun sensitivity is a real bore. Get your vitamin D levels checked - mine are horribly low.

Good luck!

[FunkyMumma]

@tintin49 - I understand your cynicism about drug therapy - always seems a bit odd that they prescribe a sick person something that will make them sicker!! I am an ex medical research scientist and I know GP's are drug company puppets, and I know drug companies 'slant' clinical trials. You won't get a bigger cynic than me!

@mandiR Good to know that Dapsone is helping you and your system has tolerated for so long.

@HermioneG - you are right, sun sensitivity IS a real bore - like I said, the only benefit to sun sensitivity is not looking my 54yrs! I will try the Dapsone and report back. The Dermatologist said I would need blood tests every week for 6wks (I've actually got a scar in the crook of my elbow where I've had so many blood tests!). I do hope it doesn't make me ill as I am a single Mum and I can't afford to be any iller than I am as life is a struggle as it is coping on my own. Dr's like to blame everything on smoking......it's prob Benson and Hedges that caused my Lupus! x x