putting on weight, skin rash ?????

[Gillian0007]

Hiya, i would like to thank everyone for their answers to my questions.....

I am just wondering if anyone has the answers to these......

I was in hospital for 3months and i was on 50mls of steriods intervenusly (sorry i cant spell) for those three months and i have been
gradually been brought down to 10 mls, but my face is still huge and my back is huge... how long does it
take for the weight to go from my face etc. I never had to watch wat i eat, but now i am, and there doesn't seem to be any change in my weight. I am on 10 mls of pred for 3 weeks now.

Also i would like to know if anyone could tell me how long the butterfly rash lasts on the face. Does it go away when the flare up goes..... At the moment i have no symptoms of lupus exect the butterfly rash, the pains in my joint are gone. So i dunno if i am still having a flare up cause the rash is still there.

I have only been diagnoised with lupus in the last three months, Discoid lupus is wat they said i have, with pains in my joints and bad rash.

My meds are only 10 mls of pred and loads of vitmains like vitamin d and c etc.#

thank you very much for taking the time to read this.

kind regards
Looking forward to hearing your replys

Gill

[chantal]

hi Gill your face will go down now that ur down on ur pred but it wont happen right away, as for ur rash it depends on what kind of rash u have, i know u have a butterfly rash, but there are differnt types of butterfly rashes, some are just a flush or swollen red, or dots. dots will take a while cortizone cream should help with any itching and will help it go down slowly, and thats only if u continue to feel beter. i hope ur doing beter soon style_emoticons/<#EMO_DIR#>/smile.gif

[Clare.T]

Gillian I am really concerned that you haven't been put on any lupus medications such as Plaquenil
( hyroxychloroquine ) . This is a basic disease modifying med taken by almost everybody with lupus. It is enough for some people but other meds can be aded short term or longer as needed

When do you see your doctor next ?

You may have discoid skin, but the other symptoms suggest you have SLE. The skin problems alone should be treated with oral medications, in my non -professional opinion.
True discoid lupus can scar very badly. ( The term 'discoid' is sometimes still used loosely to mean any sort of lupus skin other than the butterfly rash )

Maybe you should also have other disease modifying meds steroid sparing drugs to get this under control and try to prevent disease progression. Prednisone is a miracle drug but shouldn't be taken for longer than necessary

It is usual to start other meds before weaning off the pred because they take some time to start working fully.

Ask for details of the tests they have done and results. You need to be better informed about your case and the treatent options. That will empower you and make for a better dialogue with your doctors.

If a urine test hasn't been done yet, insist on it.

Please be assertive about the medication issue

Good luck

Clare

[Gillian0007]

Hiya,

Thank you very much for ur answers..... my next appointment is on Friday this week with my skin doctor....i think she wants to put me on imurane (sorry cant spell). But she wants to see how i get on 10 mls she said that maybe i won't need anyother drug. i will talk to her bout it. She said that imurane can make me feel sick. She put me on plaqueil, i was on it for three weeks and the rash got much worse, and i could not eat, gettin hot and cold, plus my liver went. She thinks that maybe i had an reaction to the drug (steven Johnston Syndrome) i was really bad. I had to go to hospital.

i have had urine tests and they are fine too.

i have not seen my rhumi for a while cause he is not concerned bout my joints i have had bone density done and everything is fine there. i also had all my organs checked and they are fine. But am testing positive the the anti Ro thing?

thanks again

Gill

[Clare.T]

I see why you aren't on Plaquenil ! Poor you.

That Stevens Johnson's is a very serious reaction, luckily rather rare. You could ask her if Mepacrine could be an option - it's another anti malarial chemically different from Plaquenil.

Imuran is very often used to control lupus. If she prescribes it tomorrow tell her you want to start very slowly and take time to build up to the full dose. That's usually a big help in avoiding any nausea. It's not worth being out off a very useful medication.

The anti Ro antibodies could mean you are very photosensitive. It's important if you become pregnant to mention them because they give special check ups just in case they are affecting the baby although that's very rare.

Let us know how you get on

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Clare