SCT chronic gvhd - started cyclosporin

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Hello everyone,

Is there any site or group that deals whith chronic gvhd? Need to get some more

information

Perhaps there should be a group for transplant patients ?

Been reading about chronic gvhd all seems very depressive.

Went to see the haemotologist today.

The last week of prednisolone at 40 mg daily has reduced the skin gvhd on my

wifes face , but the gvhd in the mouth has not got substantially better. she was

coughing out some blood from the throat for the last two days.

So today the haemotologist suggested that though she was better, it made sense

to start the cyclosporin as that would help in bringing it under control and we

could reduce the steroid.

Prof Mackinnon had suggested that.

So today it is down to 20 mg prednisolone and started 200 mg cyclosporin once a

day.

To reveiw on friday now. Problem with cyclosporin is that BP and cyclosporin

levels have to be checked so have to work that out. We have a lab that comes

home to take the samples and sends us the report, have been using it for 20

years - they dont do cyclosporin levels - so have to organise it in some

hospital lab near by.

We went to the skin specialist also. He said applying betnovate regularly as

suggested by the haemotologist was not a good idea as it thins the skin.

He suggested we switch to Fluticasone cream for the body - contains fluticasone

propionate and imidurea.

He said her scalp also had gvhd and there was some hair fall and suggested she

apply Clobetasol propionate gel cream to the scalp.

For the face he said betnovate will thin the skin and she should use - a cream

called

Elidel which contains pimecrolimus . He suggested she use that and then a

sunscreen of spf 50 - recomended Cetafil

so have switched to all those.

any one have any experience of all this?

Shes been very depressed, thought all was getting along fine and now this crops

up.

Any inputs will be greatly appreciated.

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.