[ladyblue]

Hi!
I want to introduce myself but it is not easy because my english is not so god and it takes long time to find the right word. So you have to excause me if I do some mistake, maybe you got a good laugh!
I live in Sweden and I am 51 years old.Since approximately 20 years I have
received the diagnosis SLE systhemic lupus erythematosis and I don`t like my illness sometimes I really hate it. During these year I have been given cortison
and since 10 years also Imurel, MTX (methrotrexat) Cellsept and Sandimmun.
Problem today: since a couple of months back I have got iching rashes covering my entire back, chest arms, legs and scalps, also around the eyes. The doctors have prescribed Plaquenil but very soon my eyes and sight got affected and I do not want to use that medicin since I have only ONE good eye. The doctor say that thereis no other cure and help- That makes me very worried and especially when I think of of apossible future prognosis.
So I wonder if somebody have heard of other treatment or cure for this condition? I am very glad for all kinds of help !! Yours sincerely!

 

[sadieone]

Hi Ladyblue,

Welcome to the site.

Your english seems pretty good to me

I can't give you any prescription medication ideas for your itching. But speaking as a woman who has had bad itching fits for the past 20yrs, a tub of oatmeal bath or sea salt bath might help. You may need to do this a couple times a day.

Both, you can get at the grocers. I like oatmeal bath for dry skin and the sea salt for overly scratched skin. The sea salt tends to heal the damaged skin and soothe the itching.

I hope that helps.. Hope to chat with you soon

 

[Maia]

Good job with the English and Welcome!

There are a few other medications to try, the one that springs to my mind first is being used in a few countries already to treat severe lupus and it is called Rituxan. It is actually a treatment originally for lymphoma but because it wipes out B cells it has been found to be helpful for many with lupus. It is very expensive, and can be hard to get funding or insurance to pay for it. It's worth looking into - I'm not sure it's been prescribed for predominantly rahses/joint pain/fatigue; the people I've heard about that have gotten it are usually affected with CNS lupus/lupus nephritis, etc.

For rashes, another medication called Mepacrine or Quinacrine (name varies by region of the world!) can be helpful. Those who had problems with Plaquenil are not usually affected by this medication in the same way even though it is also an antimalarial. This combined with a hopefully short burst of prednisone/cortisone may be able to take care of the rash.

Best wishes to you - take care and very nice to meet you!

 

[nickyse]

hej ladyblue
your english is much better than my swedish,i've been here in Mariestad for 8yrs and still can't get the hang of it,
any way back to the subject, i've tried oatmeal bath and find it soothing , do you find that the itching gets worse at night?.
My doc prescribed cortisone cream for me which should help, but i find that the cold calms it down alot more, so i have the heating off at night and the window open and a jar of water in the room, just to put the moisture back in the air.Hope this helps
nickyse

 

[mysharonna]

Hi Ladyblue,

Welcome!
I understood every word..your English is better than you think!

I initially had a problem with Plaquenil and switched to Quinacrine (Mepacrine) It worked wonders for my rashes and kicks in faster than the Plaquenil. As far as I know, it does not affect the eyes...the only noticeable side effect is a minor, harmless yellowing of the skin. I would look into it if the Rituxan is not an option for you.

Hope you feel better soon!
Sharon