[kath.fownes]

i have just joined this site hoping to find some help in managing my condition.i have SLE lupus and im currently having a particularly bad skin flare up.i have been taking thalidomide for 2 years now and it seems to have lost its affect.steriod creams, tablets and drips have also failed to help at all.
my doctor has suggested the next step is to try cyclosporin, does any one have any info on how theyve got on when theyve been taking that?did things improve?also someone has suggested a herbal remedy called kalawalla, is it worth trying?
any help or ideas would be gratefully recieved, im willing to try anything!

 

[cath]

Hi Kath,

Welcome to the forum. I'm sorry you are having problems at the moment.

What meds are you on? Where is the skin afffected by lupus, and do you know which type of lupus skin the dermatologist calls it?

I've not had personal experience with cyclosporin - it is used by some here, but is one of the less common choices. Hopfully someone with first hand experience will be along soon to reply to you.

Looking forward to getting to know you better

X C X

 

[LolaLola]

Dear Kath, I don't know if you have ever been prescribed mepacrine. I found it did wonders for my skin. It is gentler on you than cyclosporin.
You have obviously had a bad time. Hope things improve soon.
x Lola

 

[Raglet]

hi there

First up I need to say I know zippo about lupus skin - I get rashes, but they have never needed treating beyond the treatment I get for the rest of my lupus.

But, I do know a little something about cyclosporin. A major problem with it is that it can cause permanent kidney damage, which makes rheumie's reluctant to use it. Personally I would ask if there was any reason to use cyclosporin rather then another immunosupressant such as imuran. There may be, perhaps it is better for skin, so then it may be worth it provided you have your kidney's monitored well to pick up any damage in the very early stages.

My dog's dermatologist suggested it for my dog (yes, my dog sees a dermatologist!) so perhaps there is some reason why it is good for skin. Who knows, I certainly don't, but this is a conversation I would definitely have with your doctor before taking cyclosporin.

cheers

Raglet

 

[Clare.T]

Hello Kath
I'm sorry you are having so much trouble with your skin. I haven't come across anybody on cyclosporin for skin lupus and maybe only a couple of people on it for SLE in many years of forumming.
As far as I can make out the reasons why it is so seldom used are as Raglet says.

I had to stop taking Thalidomide although it helped my skin a lot because of clincially unacceptable side effects but I was sort of pleased because the other side effects were personally very unwelcome. It is so disappointing when you have to stop a good medicine or it stops working.

I found that adding Mepacrine to Plaquenil was wonderfully helpful. It helps with general disease modification too and doesn't affect the eyes. The Plaquenil was changed to its stronger version Aralen/chloroquine
In my case the addition of low dose Imuran gave the final boost.

It seems that Cellcept is being found useful for lupus skin. They asked me at St Thomas London where I am a patient if I wanted to try it considering that my skin isn't as good these days as it was a few years back.Cellcept is also used for SLE of course.

If your doctors are rheumatologists they might not be well up in treatment for lupus skin. If you feel that is the case ask to see a dermatologist. There are a few in the UK who specialise in skin problems of connective tissue diseases like lupus. There's also St Thomas and the associated St John's Dermatology for tertiary referral.
Certainly your doctors should be willing to explain the suggestion discussing the possible benefits and their experience of it, along with the risks and precautions that need to be taken, so you can make a fully informed decision.

If you haven't tried the Plaquenil or Aralen combination with Mepacrine, I would push for that. I take 100mgs Mepacrine a day and 500 Aralen, used to be 400mgs Plaquenil. This is a pretty hefty dose of Mepacrine and 3 x a week is more usual in the UK and usually all that's needed.

Sorry if these suggestions are no use to you but I do hope you can get it cleared up. It is so depressing dealing with skin even if it is the only thing to cope with.

There is a very new drug that's proving successful so far in limited trials but I dont know if it's been used in lupus other than discoid.

Please let us know how you get on, best wishes and lots of luck

Clare

 

[kath.fownes]

london appointment

hi all been a while since i was last able to get on to the site, it made me feel better just knowing im not the only one having problems and that there are so many of you willing to give help and advice, its much appreciated.
im a little better, have been going to clinic daily for have my creams applied and my skin monitored.i have an appoinment with dr d'cruz on monday next week and i am going to discuss with him some of the things mentioned.....thank you to all who have replied

 

[LolaLola]

Dear Kath,
You can have every trust in Dr. D'Cruz and on a lighter note he may well tell you he had a cat with discoid lupus who did very well!
Please let us know. From personal experience I know that the time before seeing him can be VERY hard as you feel there is a lot riding on the appointment. I would definitely tell you not to worry, I have NEVER heard of anyone being disappointed with him. Even my teenage Daughter is impressed with him.
X Lola