SCT chronic GVHD help needed - Ciclosporin or Steroids?

[Guest guest]

Hello Everyone, the new year started off with the news that my wife was MRD

negative and chimerism showed all donor.

Thank you for all the posts everyone sent after I wrote about our news.

But then there are things in life that are there to give you a knock to keep you

on your toes!

Just in case you are getting complacent about things.!

What I need help about is any information about any one who has had ciclosporin

for GVHD after DLI and whether prednisolone can be used or Ciclosporin has to be

used.

The last month has gone by with her having fever for which no source could be

found.

We decided to have the IV antibiotics at home rather than admitting her to

hospital, and she had 12 days of Cefmate IV twice a day, during which IVIG and

pentamidine were also given.

The temperature refused to come down to normal for the first 6 days then

responded, but still came up to 99.5 F by the evening.

The doctor had suggested getting a sputum sample done again which brought out a

bug finally, Brahmella Catarrhalis which was resistant to many antibiotics.

Fortunately sensitive to some, and she was put onto Oral Cephalexin, which

promptly brought the fever down.

So that is under control, but the GVHD she had got in November has come up

again. It was brought in control by High dose methyl prednisolone for 5 days and

then prednisolone on a reducing dose which was tapered off on the 2nd December ,

just before the wedding of our son.

Now for the last 15 days the GVHD has increased on her face and also come up in

her mouth .

She has lost her appetite and was getting a pain in the throat.

We met the haemotologist on Monday and she looked at her and said whats happened

to your face! The haemotologist examined her and said it was the GVHD and said

it was chronic GVHD now. and said maybe she would be needed to start on

Cyclosporin, but was hesitant about it.

She rang Prof Mackinnon that evening and they decided that my wife should start

prednisolone 40 mg daily for 2 days and then Ciclosporin.

So we gave her 40 mg prednisolone yesterday and it seems to have quite an

efffect, reduced the pain in her mouth and the skin seems better.

So I rang the doctor, she said then lets continue the prednisolone till Friday

and then we will take a call on whether to start the Ciclosporin then.

What has also been happenning is that she gets neutropenic regularly and is then

given Neupogen.

It first started off about 6 weeks after the DLI, when the neupogen wasa given.

subsequently the frequency of the Neupogen has come to almost weekly, and last

week even after giving the Neupogen , her ANC fell to 600 in 3 days.

So now she had it daily for the last two days.

The platelets also started falling.

But now after the prednisolone yesterday, they have come up.

The question is can prednislone control the GVHD or does cyclosporin need to be

started.

Prof Mackinnon says it is usual for Cyclosporin to be given in some cases, the

haemotologist here said in case we start it we cant stop it soon and it reacts

to a lot of antibiotics etc and since my wife has had various infections over

the last few months, it could lead to problems.

But then also says that the Ciclosporin may be indicated.

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?