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Low hemoglobin level

Has anyone had their hemoglobin level drop, it was fine but all of a sudden started to go down, at the moment it’s 95 all my other counts are normal.
At the moment I am suffering with fatigue. I had my transplant in January and I felt brilliant for the first 3 months and feel I’m going backwards.
I have had skin GvhD and still on ECP.


  • Good morning Steve,

    I'm also called Steve and am one of the Community Champions here on the forum. I'm a transplant patient myself and had my transplant in January 2013. Like you I also had skin GvHD which was treated successfully with ECP. It sounds like you're on a similar path to me.

    I'm sorry to hear that your hemoglobin has dropped and can understand that you might be worried. As we recover it is not unusual for our counts to fluctuate a little and hopefuly yours is just a temporary drop. As your other counts are showing as normal that sounds like a good sign that your bone marrow is still working well.

    I don't recall having any issues like this due to ECP, but wondered whether there have been any changes to your treatment or medication that might cause a temporary blip? Have your medical team suggested any cause at all? Your fatigue could be linked to your body overworking itself, or conversely I guess the fatigue could be a symptom of the low hemoglobin? I know with ECP you have to be cautious about exposure to the sun and even now I feel that it saps my energy if I'm out in full sun for any length of time so hopefully you are being cautious during the current spell of good weather.

    I must admit I never really paid much attention to my counts during my treatment and let my medical team take the lead on whether there should be any concern or not. We regularly hear on the forum from patients whose cell counts have dropped so I don't think it's unusual and it seems to be quite common as our new system establishes itself. Its quite a while since my transplant now but I recall I still needed the odd transfusion some time after my transplant to give me a boost.

    How have you felt with the skin GvHD and the ECP treatment? When I look back at photos of me at the time I can see the redness around my neck and my eyes from the GvHD. Less visible in the photos is the dryness and flakiness of the skin which itched so much. The only relief I got from it was by having a daily long soak in a bath with E45 bath oil in it which moisturised my skin for a few hours at least. I didn't find the ECP too bad at all, just time consuming. I'd usually take a book or watch a film on my tablet and the time would soon pass. I'm pleased to say that the ECP did eventaully work and resolved my GvHD and hopefully it is showing signs of working for you.

    All the best,


  • One Dr said he didn’t know why my hemoglobin was down but nothing to do with my previous condition, still a big worry though
    As for the gvhd rash is a lot better to the point I can’t see a rash

  • Hi Steve,

    I was wondering whether your levels had improved at all since the last time you'd posted and whether it was a temporary blip or things are unchanged. I hope things have picked up.

    Good to hear that the GvHD has improved and hopefully the ECP will resolve your issues.



  • Hi Steve, I have only just seen this thread but thought the info may Still be helpful to you or to others.
    My husband has been on fortnightly ECP for 3 years. A few months ago he became even more breathless and found to have anaemia and low iron stores. Previously he had very high blood stores due to several blood transfusions pre transplant. He had a colonoscopy to check no bowel issues and no evidence of blood loss from anywhere else. Apparently anaemia is common with ECP due to blood losses in the machine etc. I did find a reference that 68% of a cohort of patients on ECP at 5years were anaemic. 20+ % at 2 years.
    Hope this is of help.
    All the best

  • GailW thanks for the anaemia statistics. Just started ECP and have had haemoglobin blip which might have been a false reading they thought. I'll keep an eye on it just in case Dr's don't.

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