Treatment options for skin cGvHD

Graceelizabethward

Hey everyone,

I was just looking for a bit of advice and your experiences of chronic skin GvHD.

I am 23 months post SCT for AML. I had GvHD of the liver in August 2015, 6 months after transplant, which was successfully treated with steroids.

I have been suffering with problems with my skin for around 6-8 months including dry, flaky skin, swelling (the worst of it restricted to my lower half of my legs) and some joint restriction around my ankles. Recently my doctors have diagnosed cGvHD of the skin confirmed by a skin biopsy. They initially decided to treat topically with steroid cream which doesn't see to have done the trick so are now deciding on the best course of action.

My doctor did not feel it was urgent enough to start steroids and/or immunosupression right away. At my last appointment he said that we will need to start treatment this month and suggested steroids (approx 60-70mg) alongside a 2nd line treatment of either ECP or Vidaza (azacitidine) which is part of a trial.

While I am on board with starting steroids, I am a little troubled by the 2nd line treatments (particularly Vidaza) as from what I have read online these are usually only started for refractory cases or where steroids aren't appropriate. Is this right?

It just seems a bit like overkill to me and a bit extreme considering he said it was a "mild" case, that other treatments haven't been attempted, and that these treatments are intensive and have some not nice side effects.

On top of it all I have just started back to uni (in a clinical setting) and I don't know if these treatments are compatible with me continuing with my course.

I am feeling so frustrated and upset with the whole thing because I felt like I was starting to get back to some sort of normality and now this.

Thanks in advance.

Hayley_Anthony Nolan

Hello

Thanks for posting on the forum, I am the nurse specialist in the patient services team. I am sorry that you are being troubled by chronic skin GvHD.

You are correct that second line treatment such as ECP is offered in the situation of being refractory to steroids but in some cases having ECP is also used in conjunction with steroids. From a practical point of view ECP can take a while to arrange and plan so in the meant time you can receive the treatment with the steroids. I would imagine that if you then did respond to steroids then there will no longer be the need for ECP. It is however worth while having a consultation with an ECP specialist, they will give you lots of information as well as assess your skin and advise if they think it is a necessary treatment for you. Results from the use of ECP, especially for skin GvH are very good and there are very few side effects. I have had several patients who have received it and their skin and joint movements have really improved. The downside to ECP is that it is often a long commitment of several months with visits of 2 days every few weeks, which can be difficult to maintain.

Unfortunately I am not as familiar with the use of Vidaza in this setting, I know there are trials that are showing that it can be used to treat chronic GvHD but I do not know the success of this. If you are being offered it as part of a trial then you should have a nurse or keyworker who can go through what is involved with the administration, side effects and outcomes before you make a decision because remember it is your decision to join a trial.

It must be very frustrating and upsetting to be trying to get your life back on track after so long to now be faced with more treatment. I guess you have to consider the long term goals too though, your chronic GvHD needs to be treated effectively because if not the skin and restricted joints especially could get much worse. Receiving the best treatment now is essential for your future quality of life. Maybe steroids seems like the most practical option but long term use of steroids are not beneficial, they decrease muscle and bone strength and can cause osteoporosis and can affect weight and diet which can lead to developing other long term health problems. Looking at all the options in case steroids do not work is sensible especially with your past history of receiving steroids for liver GvH, I am sure your team would be reluctant to put you on another long course.

I would suggest that you discuss your concerns with the treatment with all of the team and also tell them of your worries about uni. Some of my younger patients who are at uni have managed to work an ECP timetable around their study, so it can work if ECP is the route you go down. Whatever your decision its important to everyone that you continue with your goals and I am sure they will do what they can to help you achieve that.

I am sure that other patients who have received ECP and experienced similar frustrations to you will post on here with there advice and support.

Please keep in touch
Best wishes
Hayley

Dieseldrinker62

Hi Grace, I had skin GvHD and like you it was treated initially with topical steroid creams and oral steroids (prednisolone) which eased it at first but never got on top of it.

I can't speak for Vidaza as I have no experience of that but my GvHD was eventually conquered with ECP. Whilst the treatment itself didn't present any particular risks in terms of your ability to return to studies in a clinical setting you may like I was, still be on a low level of immuno suppression and that is possibly what might present the risk.

There are other threads which go into more detail about the ECP treatment and having had that at intervals over the course of 18 months there are no side effects to speak of, but it is time consuming. However I can say that it is worthwhile in the end as the itching, redness and rashes are a thing of the past.

If you have any questions about ECP i would be more than happy to answer them and hopefully others may have experience of Vidaza.

All the best,

Steve