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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Antibiotic use

I am 5 years post transplant and have been taking penicillin every day. I heard that this is no longer the suggested treatment and wondered if that was the case and if it is ok to stop taking them. If so, is it ok to stop straight away or be weaned off gradually.

Thanks

Comments

  • Chris

    I hope you're able to celebrate the 5 year anniversary in these unusual times. You're a few months ahead of me, my five year anniversary is in October.

    I also take the dose of penicillin every day, I assume like me you take it due to functional asplenia from TBI. I was told at a clinic appointment last year that at the five year anniversary I would have a choice between continuing to take it (potentially for life) or coming off it.

    If I chose to come off it then I would be prescribed a course of amoxycillin which I should keep ready in case required and I would be told what symptoms to look for that should prompt me to take it. If I did use it then I would be prescribed a replacement so that I could have that ready. They also said that it would be replaced so that it's always in date.

    The doctor said it would be entirely my decision but that he would expect given my age (43) that I would choose to stop to taking it, which is certainly my intention.

    I assume similar advice would apply to you but I would raise it with your doctor to ensure you're comfortable with the implications of the decision.

    Good luck!

    Tony

  • Thanks very much. I will check with my doctor but interesting to hear your experience. Good luck! Chris

  • Hi Chris

    I'm 4 years post, I have asked before how long I will be on penicillin and to date the answer has been 'for life'. I recently had a consultation and there was no mention of coming off now for in the future. Most likely it is dependent on personal medical history and progress.

    I've advise waiting to see your consultant before making any decision especially during a pandemic.

    Best Wishes

    Rachel

  • Hi Chris,

    I'm 7 years post transplant and am also on penicillin. Like you I've been told it's for the rest of my life and is primarily to prevent me from getting chest infections as I understand it. I did have a spell of about 12 months where I stopped taking it (largely due to laziness) but it was a dose of pneumonia that prompted me to take it back up again and have continued since.

    I had a conversation with a fellow patient who is absolutely set against taking penicillin and prefers a strict fitness regime and diet to stay healthy. I've never been a fitness freak and following a healthy diet is not a strong point for me, so until advice from my medical team changes I'll keep taking the penicillin.

    At the end of the day it's a very minor inconvenience and apart from tasting foul and making my pee smell I'd rather have the assurance that it is hopefully offering me some protection.

    All the best,

    Steve

    chelle_16
  • Hello. I’ll add my experience to this! My 5 year anniversary is also in October. I was given the option to stop taking the penicillin about 18 months ago. From memory, I was told it was prescribed to ‘protect’ the spleen following the SCT, in the same way that people are prescribed life-time penicillin following a splenectomy. (I did not have TBI, so that may have influenced the decision). And that the penicillin would not be the antibiotic of choice for chest infections, which I seem to get each winter. So I stopped taking them! And I’ve not noticed any ill effects.

    Dieseldrinker62
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