Rash not GvHD?

Well that discussion took a very useful turn about the pencillin.  But my original problem with the rash hasn't gone away.

Back at outpatients today, doctor took a look at rash. He thinks its either a reaction to cyclosporin, or a viral thing like chicken pox.  I have to double my Aciclovir and will be in 'isolation' next appointment.  

He didn't say that I actually have chicken pox and the spots look quite mild compared to the horror pictures I've found on the internet. The inflammation seems to vary throughout the day, sometimes almost fading away. Its mostly scattered small red spots and only the odd one looks like a pimple or blister.

Anyone had similar problems, or had that diagnosis but different symptoms. As mentioned before, it's not itchy, I feel well and do not have a temperature.

Thanks Tessa

Hi Tessa, 

Not shingles? As that can rear a head post allo. And doubling the Acyclovir would sort that out too anyway. Have you had Chickenpox? 

Hope it recovers soon. 

Hugs xxx

Hi , ahh sorry for hijacking your original post Tessa, guilty as charged ;)

Sorry the Docs are struggling to get the back of this problem. Have they reduced your Cyclosporin yet, it's not a great thing to be putting our bodies and did give me kidney problems but not the skin. Hope you can get the back of this but good that it's not itchy :) 

Thanks both.  I don't have any of the other shingles symptoms and it affects both arms. (According to NHS site, shingles usually only affects one side of body).

I had chicken pox as a child, but I'm told my donor and I were both CMV negative. (This confused me until I realised they are not the same thing.)

Cyclosporin dose just been put down to 90mg from 110mg. I'm at day 63.

Tessa (edited several times)

Hi paul

I have GvHD in my liver and am being referred for light therapy, extracorporeal photopheresis (ECP) i think is its clinical name. 

I was wondering if this is the treatment you had and if it was could you tell me the ground truth about what the treatment entails (cannula/central line, sensations, time scale) and how quickly the treatment worked?

please feel free to say no if you don't want too.

thanks

linton 

Hi Linton, sorry to hear you have GvHD in your Liver and you have been referred for ECP.

There are a few in the SCT Group who have had ECP and I have also talked with others face to face about it and they found it no problem, just time consuming.

For them it was a cannula as their central lines were out, just like giving blood and getting a blood transfusion, not sure about time frame.

You could put ECP into the search tool and see the discussions and there is also Jane, our Nurse who has experience in Stem Cell Transplant and post SCT aftercare..... but allow a few days to get an answer.

I will tag Paul1969 to see if he picks up on your question......... but I had skin GVHD and only had creams and some UV skin treatments.

All the best.

Hi Linton

I had GVHD of the skin and of the gut. Treatment was different for each one.

For the skin I had 25 UVB photo-therapy sessions. That was just standing in the equivalent of a tanning booth for between 5 and 10 seconds twice a week.After 8 sessions I saw improvements.

The GVHD of the gut caused bile acid malabsorption which they dealt with using a fat binding medication.

So I can't tell you anything about ECP I am afraid. I know it has been mentioned previously on the forums so I will have a search for you and see if I can unearth anything.

was having ECP (not sure if she still is.) Hopefully she will notice I have tagged her and be able to give you some more first hand experience.

I did indeed have ECP to treat stage four gvhd of the liver, gut and bowel. In terms of sensation, my ECP was done using a Hickman line, so I didnt feel anything. I felt pretty sleepy afterwards though. Basically how it works is they process x amount of your blood (usually about 1500ml) and separate the white blood cells from your platelets and red blood cells. Once the adequate amount of cells have been collected the WBC are injected with a light sensitive dye and put through a light box to cause cell death. These dying cells are then returned to you and your immune system doesn't know what to do with all these half dead cells so it shuts itself off temporarily, thus controlling the gvhd. 

Things to be aware of: don't eat a fatty meal before your treatment as it makes it very hard to separate off the plasma which will become thick and milky. If you feel tingling around your lips, hands or legs, tell your nurse asap as it can mean your calcium has dropped during treatment.  Your blood levels need to be at a certain level before they can hook you up to the machine so dont be concerned if they say they have to postpone your treatment