Immunoglobulins

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Afternoon everyone

Just thought I would update you all on where I am with my immunoglobulin levels. I started sub cut immunoglobulins back in 2016 as my IGg levels were too low. Most likely this was as a result of having retuximab around 4 months after my stem cell transplant to EBV (Sept 2013) as this is now known to have possible side effects on your white blood cells ability to produce IGgs.

In late March this year I took the decision to take myself off the Hizentra Immunoglobulins that I had been injecting myself with every two weeks as I was keen to see where my true levels were. It takes about 2 months to completely leave your system.

I had bloods done in June when I was just at the bottom end of normal and have had them done a couple of weeks ago. My IGa and IGm levels were fine but my IGg levels had dropped a bit more and were 4.39 with the normal range being 6 to 16. 

So a bit low but this seems to be my new normal. The good thing is I haven't been getting unwell at all so in conjunction with my hospital team we have decided to continue without the Hizentra and see what happens. They have given me a two week supply of some good broad spectrum antibiotics just in case I start to come down with anything. 

Hopefully I will continue to be Ok and we will see what the next blood results are in December. Not missing injecting myself every two weeks with twin 12mm butterfly needles for 45 minutes at a time Relaxed

  • Hi Paul , I see you are off to the sun soon.

    The post SCT journey is full of twists and turns but interesting to see you have made the plunge and cut out the immunoglobulins and so far so good.

    I tried them a few years back when I was in the middle of regular Pneumonia and Neutropenic Sepsis hospital stays but my body just did not get on with them, actually had some very bad reactions so my ‘new normal’ has my levels being at the low end of acceptable…… and I am 3 years out from my last infection so doing ok.

    Just today I was talking with my SCT team and we have agreed to take away the antibiotics I have been on for the last 6 years as these were bizarrely stopping my cardiologist putting my Statins up to the required levels after my heart attack back in April….. we agreed that reducing the heart issue was more important than infections and like yourself I have some emergency antibiotics in the house.

    Have a great time away.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi everyone

    Thought I would give an update on this. I am now just a few months out from 10 years since my SCT and I continue to keep well and life is very normal.

    The one area of my blood counts that has never really recovered is my IGg counts (immune system). We (me and my immunology consultant) are fairly certain this was due to having needed rituximab 4 months after my SCT to treat EBV.

    After being on sub cut immunoglobulins since 2016 I stopped them in April last year. My IGg counts have slowly dropped and the latest bloods have them at 3.9 so well below bottom end of normal range of 6.0 to 16.0

    But.. I am not getting any infections or having any issues. I was given a Typhoid vaccination last week to see if I get an immune response and bloods will be checked again in 5 weeks. I felt fine following it so fingers crossed. I am also having a full MOT so to speak with an armful of blood taken and a full CT scan next week to make sure lungs etc are all fine. The rationale behind this is the IGg low count on its own doesn't mean I have to go back onto immunoglobulins but if I had any abnormalities with lungs or chest etc then that would tick another box towards starting them again. External and listening to my chest and ECG last were all fine.

    Sometimes it is easy to worry if counts go low in any particular area but if you can have a good conversation with your team a sensible robust approach can be taken to get the best and most appropriate outcome for you. Fingers crossed it all continues to be Ok, I avoid any illness and I don't end up sticking needles back into myself any time soon!

    Paul

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  • Good to hear from you Paul.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Paul hi,

    Good to read this as after 2nd stem cell transplant following daratumumab dexamethasone, I have become IgA deficient - 0.06 g/L instead of range 0.8 - 4.0 I am classed as IgA Kappa myeloma and the reading was 52.0 at diagnosis! IgG is down at 3.9 too! Yet consultant seemed none too fussed about figures as I likewise as yet have not suffered 100+ days post STC. No talk of any treatment. Hair growing back - tho' a tad greyer!

  •  

    Hi, good to hear you are doing well and also like me not getting any infections and the such like. Still much the same here other than they are doing some scans, bloods etc which seems to be part of a 10 year post SCT review to give me a "MOT".

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.