DLE on PRED & Dapsone

[DLEatlanta]

Hello, I'm new to this site. I am so frustrated with taking all of these pills that I decided to write. I've been diagnosed with DLE since 1998. I had a bad flare July of 2004. It's almost been a year and we can't get it to stop. I have been on Prednisone from 60mg down to 20, then 10 and off. Everytime I go off, the flare comes back within a week or two. I started Dapsone about 2 months ago, which I'm not too thrilled about. Not much info about it. I have gained 20 lbs. I really want to be off of Pred. I experience every sympton is gives - appetite, hair loss, indigestion, insomnia, mood swings. I got the bright idea to stop taking it when I got down to 10 mg. I was still taking the Dapsone and started experiencing extreme migranes w/nausea. I stopped taking everything. Within the same week I could see my cheek starting to swell and the redness returning.

Any suggestions? I have scheduled an appt. And I started the Prednisone back up with 20mg.

I've also had this ache in my calf for about a week. Will definitely bring that up at appt.

Thanks

[raggedyann1]

Atlanta,

Teri is right, don't go cold turkey off your meds especially prednisone. When you have been taking prednisone more than 10 days your adrenal gland stops producing cortisol (the = of pred), so sudden stoppage can literally kill you.

I was interested to see that you didn't mention plaquenil. Plaquenil is an anti-malarial medication that is effective on DLE, SCLE and SLE. It is the safest med we take in fact it is far safer than many OTC meds we take without thinking. It is very effective on lupus skin and joint pain. It does take approx 3 months to kick in and 6-9 months to reach peak effectiveness. Prednisone is usually used to bridge the time btwn dx and when the plaquenil starts working.

Are you being monitored by a rheumatologist or a dermatologist.

Let us know how you get on.

Take care,
Karen

[Clare.T]

I am sorry about your discoid lupus and the difficulty getting effective treatment.

You don't say what other treatments you have tried. A very useful combination is Plaquenil 400mgs or Aralen up to 500mgs along with Quinacrine(UK Mepacrine 100mgs a day, depending on ideal body weight and doctor's prescribing practices and all.

There are many other drugs that can be added or used. In my case low dose Imuran ( 75 mgs ) added to the above Aralen and Quinacrine combo brought me into remission after 26 years widespread sub acute cutaneous

I tried Dapsone years ago to no effect. I don't know how long it should take to show results but with the antimalarials there should be some obvious improvemnt with a couple of months. I have the impression that this might be the case for other drugs too.

Also the Dapsone started affecting my blood - some sort of anemia, I forget which. You need very regular testing for side effects anyway.

It's a fascinating drug - this is a major paper on it

http://dermatology.cdlib.org/DOJvol8num1/r...psone/wolf.html (http://dermatology.cdlib.org/DOJvol8num1/reviews/dapsone/wolf.html)

There are many other references on google.

Prednisone is usually only used short term in skin lupus for severe flares. Anybody taking it over 3 weeks has to wean very very slowly off it under medical supervision.

There's a variety of other drugs that can be tried-accutane, methotrexate, basically most of the drugs that are used for systemic lupus.
Thalidomide can be very effective- it helped me a lot but plateauxed and also I got peripheral neuropathy in toes so had to stop it . I was rather glad because it had some pretty strong side effects, enormous appetite and brain death for example. :)

Here's another good article on skin lupus

http://dermatology.cdlib.org/DOJvol7num1/t...upus/werth.html (http://dermatology.cdlib.org/DOJvol7num1/transactions/lupus/werth.html)

There are some specialised dermatologists around. If you are in the USA there's Dr Callen in Kentucky, Dr Werth at Penn Uni, my doctor , Dr Franks in NYC, and others whose names can be seen on articles like those on emedicine.com/. There are a few in the UK too, about seven specialising in lupus I think (!)

Wishing you the best of luck :luck: :luck: :luck:

Clare

[DLEatlanta]

Thanks for all your feedback. I agree that I should not have stopped my meds cold turkey. That's probably what caused the severe migraines. I had been on Plaquenil off and on throughout the years and after this last flare we were trying new things.

I go see my derm Dr. today. Wish me luck! :cry: