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Grade 4 gvhd

My brother 24 yr old underwent stc therapy 2 months ago and has severe grade 4 gvhd. The steriods and medicines the doctors tried isnt working and the diarrhea is not getting any better just a little progress in 4 weeks. We are very confused and dont know what to expect. The doctors are not very hopeful.

Comments

  • Hi Neela, it's Caroline from the Patient Services team at Anthony Nolan.

    I'm so sorry to hear your brother is having such difficulty with GvHD.

    Our Anthony Nolan Clinical Nurse Specialists (CNS) have advised that your brother's medical team will be very experienced in managing acute GvHD and they will have local policies in place for his treatment options.

    They recommend that your brother has a meeting with his CNS (if he has one) or his doctor to discuss all your concerns and the best way forward now regarding his treatment.

    I hope this helps.

    All the best,
    Caroline

  • Hi Neela,

    I am so sorry that your brother is going through this. My fiance also suffered from grade 4 GVHD. The doctors always told us that the gut is one of the slowest parts of the body to heal and that it just takes time. The steroids did not help my fiance but he started receiving photopheresis (ECP) treatments that definitely seemed to have a positive impact.

    I know this can be a tough and scary time, and there aren't any quick fixes for these things, unfortunately it just takes a lot of time.

    Thinking of you and your brother and sending my best wishes.

    Krista

    Julsey
  • Hi Neela,

    As Krista has said GvHD can take a long time to overcome and 4 weeks is quite a short time for treatment to have had any dramatic effect in your brothers case. It can be very frustrating and I do understand how nervous you are.

    I had skin GvHD and the steroids I started on had a slight effect in the early days but didn't deal with it effectively and certainly didn't get rid of the GvHD. Like Kristas' fiance, it was photophoresis that eventually dealt with it, but it was a very long process.

    I hope the medics are able to come up with something that at least eases the discomfort while they identify a treatment plan which will deal with it long term. There will be a variety of options they can pursue I'm sure and it will be a case of identifying which will have the most successful outcome for your brother.

    All the best,

    Steve

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