CD4 levels post transplant

FormerMember
FormerMember
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Hi all

I'm 6 months passed transplant and after seeing an immunologist at my hospital, he has sent a letter to my consultant saying my CD4 level is low 0.25. Therefore I should be on co-trimazole to prevent fungal pneumonia. I was on co-trimazole for about 4 months after transplant then was told I could stop taking them. I take penicillin daily now only.

My question is, does anyone know anything about CD4 levels being low after transplant and whether it recovers over time. My bloods are all good and normal. 

Debbie

  • Hi Debbie, I am away from home so don’t have access to my bundle of stuff I kept during Allo so would have to check re CD4.

    But you could put the question to Jane, our Nurse who has experience in Stem Cell Transplant and post SCT aftercare at https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/transplants/discussions

    I was on Co-tramazole (Septrin) for well over 2 years post Allo but at 11 months I was put Pentamidine every 4 weeks for 3 months to give me a break from the Septrin...... but this was like breathing through an ashtray for 20 mins I am on Clarithromycin for life (I am allergic to Penicillin) and Ad-Call (Vit D)

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Thanks Mike

    Debbie

  • FormerMember
    FormerMember in reply to FormerMember

    My CD4 went up quickly in the first few months then just stalled. Different doctors seem to measure in a different way, putting the decimal point in different places. One told me the range was 0 to 3, and another 0 to .3. So you need to know what scale they are using. I was 1.8 early on but can't get past 2.3 even after two years. I am still on co-trimozole three times a week. 

    Some of the hospital staff take a pragmatic view, that things aren't perfect but I have to get on with life and can't be a patient forever. Others think I should still approach everything wrapped in sterile cotton wool. I avoid crowded places especially if a lot of children or there are winter bugs going round. But I get on with most garden jobs now, just careful about breathing dust and avoiding scratches. 

    Tessa

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Tessa

    That's useful information thank you. I will ask ref the decimal point. They shouldn't have taken me off co-trimazole. It was only because I saw an immunologist that the CD4 level was looked at.  He called it slightly low at 0.25 so I need the level clarified. I'm only 6 months post transplant and I don't avoid anything now, food, lifestyle or people. 

    Debbie

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Debbie

    Did you have an allo or an auto SCT?  Recovery is quicker with an auto (I had an allo). If your immunologist is saying 'slightly' low then maybe its equivalent of 2.5 on the scale we use. Which sounds pretty good to me. I can eat most things, more a case of how it has been prepared, e.g. avoid buffet food that has been sitting around luke warm.

    Tessa

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Tessa

    I really hope it is 2.5 as that would be amazing at 6 months.  I don't want to get too optimistic though just incase. It obviously warrants co-trimazole. I am on prophylactic penecillin too which I'm not happy about, but I will speak to the immunologist again when I see him.

    I had an allo transplant with an unrelated donor and the intensive myloblative conditioning, so it would make sense that my immune system is slow to rise. I'm just hoping it really isn't 0.25, but 2.5! I do tend to worry until I get an explanation.

    I will find out more when I go into clinic next.

    Debbie

  • Just home Debbie so checked all my stuff....... “CD4 Levels within acceptable levels” so help for you Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Debbie!

    Your CD4 is considerably higher than mine was, even after a year post-transplant!

    At 13 months it was 0.07, which the consultant called 'non-existant'.

    At 15 months it was 0.11.  

    I was immuno-suppressed with Prednisolone between February last year and this (so for a year) because of acute gut gvhd.  My CD4 hasn't been tested since I came off them and my immune system was at last allowed to do its own thing.  It's due to be retested at the end of May, so I hope it might have imrpoved sufficiently for me to begin the revaccination programme.

    I take Aciclovir 3 x daily, for prophylactic anti-virus protection and have a monthly nebuliser session with Pentamidine, as prophylaxis against fungal pneumonia.  I don't take any prophylactic penicillin as the consultant says I don't need it. 

    Other than a gall bladder infection, which is not transplant related and just bad luck, I haven't caught anything since I was discharged after my transplant. 

    Keep on keeping on! 

    Best wishes, Sheri xx

  • FormerMember
    FormerMember in reply to MissSatomi

    Wow Sheri!

    Thanks for that. Hope yours has increased on your next test.  It's a minefield! I think they all have different opinions, as they have me on prophylactic penicillin which I don't think I need.  It's a long and slow recovery. I was doing amazingly well, but have been really knocked back by a virus for the last two weeks. I suppose it's very up and down in the first year.

    Debbie

  • Hi, I had an auto SCT in May 2019. My CD4 is 110.  Doctor says minimum is 200. I am on Septrin and Valtrex. I don't kmow the units of measurement . I got pneumonia 7 weeks after the transplant even though I was on the septrin. I wonder is there any point in continuing to take these meds.