SCT chronic GVHD predisolone or cyclosporin?

[Guest guest]

Hello everyone,

Yesterday the doctor examined my wife again, she has developed chronic GVHD of

the skin.

It is now on her face and also in her mouth.

She was started on prednisolone 40 mg on the 18th Jan. and we were to see the

doctor again on the 21st after 3 days of prednisolone.

The prednisolone has helped, her face looks better, and the the inside of her

mouth is not so sore also.

The doctor said lets try the prednisolne for a further 3 days and then we will

take a call on whether to start the cyclosporin or not on Monday.

But then Prof Mackinnons mail arrived in reply to my mail of the day before and

he suggested that cyclosporin would be a good idea as it would reduce the amount

of steroids to be given.

So the haemotologist said lets start her off on 200 mg of cyclosporin.

Then she sent me a whole two pages of cyclosporin on mail.

The only thing I am concerned about is that cyclosporin is immunosuppressive and

says you are open to infections. She has already had so many infections since we

came back and they have been using the strongest antibiotics to control them -

Meropenum for one.

Now starting cyclosporin would mean she will be open to more infections.

The question is can the cronic GVHD be controlled by seroids alone?

If so what are the dangers and what are the pros and cons?

Have decided to wai till monday to start the cyclosporin now after the doctor

sees her again.

In the meanwhile I will be very grateful if any one can come up with their

experiences.

Her left eye is still a bit of a problem, has some redness and inflamation so

use eye drops of various kinds. The vision in that is gone but the doctor says

we have to keep it free of infection other wise it may go to the other eye.

Is skin GVHD dangerous or is it just something you live with?

It came up all over her skin and before it went to grade 4 they started her on

IV steroids which helped, then tapered off the steroids.

The GVHD which started off as raised red bumps faded out to brownish patches all

over the body , which she is upset about. She says at least I looked ok now the

skin has these patches all over.

I told her people go and get tattoes all over there body spend so much money on

them - and you have natural freestyle ones

- she is not amused!

Any inputs about this will be greatly appreciated.

Thank you for your time.

Best wishes and good health to all

from Delhi

Wife diagnosed at age 43 with CLL in 1997

Ran the gamut of Chlorambucil, FR, FCR till 2008

Under Prof Catovsky's guidance.

Finally Ofatumumab in 2009.

SCT from sister in Nov 2009 at the Royal Free London

under Prof Mackinnon

High dose DLI in September 2010

Now chimerism test shows cells are mainly donor and CLL cells gone.

MRD test says no evidence of disease.

Now chronic GVHD of skin and mouth.