Graft Versus Host Disease (chronic)

Hi, I have undergone  two SCT, the most recent being 2018. I am suffering a lot with GVHD. I have it in my abdominal wall, lungs and now my joints. I suffer from it daily, pain and swelling in my wrists, knees, hips and fingers. When i fist wake up, it is unbearable. I cannot bend my knees nor can I hold a cup of tea/or hold my toothbrush due to the swelling preventing me from bending my fingers!    I am on lots of medication, some of which is because of my GVHD of abdominal wall and lungs. The medicine is hopefully dampening down the effects of GVHD. Now that I have it in my joints too, I have started another chemo which has a great track record for helping people who are suffering from this debilitating disease.  Unfortunately, I do not feel that it is helping me at all.....as i am regularly sick/runs and I feel as if the swelling/pain has gotten worse since I started it 4 weeks ago. I am extremely upset by this, as we all had high hopes that it would work.  My question is, is there anything I can do like physiotherapy, that will help with the joint stiffness/ swelling of joints? Would swimming or walking work? Or could this aggravate things and make them worse?  Is there anything in my diet I should avoid?    Honestly speaking, this is really getting me down. I have not really had a good month since the transplant....6 years of constant pain/sickness would test anyone's patience! I am 57 and usually very active. The swelling has put on a stone in weight. Would really love to hear your advice .    Many thanks Jane x

  • Hello and thank you for your post,

    I am sorry to learn of your situation, it sounds like you have been through a lot.

    You may have seen this but we have some information about coping with chronic GVHD on our website. As you can see daily gentle exercises are recommended to help with this. but It is worth checking with your team at the hospital if any particular exercises might help, they may also recommend seeing a physiotherapist for advice.

    Having looked into this, I cannot find any specific advice on what foods to avoid, usually, a healthy balanced diet is recommended mainly for your general health. Hopefully, your team can give you further advice as they know your situation.

    Blood Cancer UK are for people affected by blood cancer, they have specialist nurses who you can contact for advice, and there is also a forum which you may find helpful to post on.

    There is also information on the Antony Nolan website about GvHD.  I was unsure what specific treatment you are having but on their website, they mention that a new drug Belumosudil has been approved for chronic GvHD. I wondered if your team knew that you feel the treatment you currently have is not working. This may be a new treatment option to discuss with them.

    I hope this helps a little. Please feel free to get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care, all the best

    Jemma