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Post-aciclovir shingles

So I came off the antiviral drug aciclovir a couple of weeks ago (decided at my first clinic appointment after my first transplant anniversary), and now have shingles. Apparently this is no great surprise, but I'm now on a much higher dose of aciclovir for seven days, before going back to the maintenance level for the time being – I'm not sure for how long.

I spoke to a friend who had a transplant a few weeks before I did, who said at his last clinic (again after the first anniversary) his consultant asked how happy he was to keep on with the aciclovir, because if he came off it he'd "probably get shingles". My friend was sorry to hear I had shingles, but said he'd learn from my example and tell his consultant next time he's in no rush to stop the aciclovir...

What are other people's experiences of this? As far as I know, aciclovir has no significant adverse effects, and I think some people keep taking it indefinitely; is it worth coming off it if you're that likely to get shingles? Does the likelihood reduce with time, I wonder? Or is getting shingles in some way a positive step in building up the new immune system? I'm going to run these questions by my consultant next time, but I'd love to know how things have panned out for others.

Meanwhile I'm discovering why the Italians call it "St Anthony's Fire" or "Satan's Flames"...


  • George,
    Sorry to hear you suffering with shingles, something I have managed to escape but had a near miss last year when one of my grandchildren whom we see a lot of caught chickenpox. I had been in her company a few days before she came out in spots. I contacted my transplant unit Hotline and was advised to go in and have vaccines to prevent shingles. Two huge injections where it hurts most, but they worked.

    I stopped taking acyclovir some 10 months after transplant in May 2012.

    I do seem to be prone to catching flu viruses, I had one between Christmas and New Year and another just 5 weeks ago both different strains. I was admitted on both occasions until the types were identified and the appropriate anti virals and antibiotics given.

    Like you I think each time I catch something that the immune system should be getting stronger, I am now 3 years on from transplant and ever hopeful things will improve and the chance of picking up bugs will reduce.

    Hope you make a speedy recovery.
  • My husband asked about his consultant about this after reading this post..he said it's normally the case, but he wouldn't be taking my husband off Aciclivor for at least 2 years by which time he would have had all,of his innoculations by then.

    I also wondered whether he would be able to have the shingles jab eventually. My thinking being that although it's says you shouldn't have the shingles jab if you've had chemotherapy...could it be that now he has new blood DNA, does this apply??
  • I'm two and a half years post transplant and still on Aciclovir at the moment. Because of my GvHD the rate that my immuno-suppressants was reduced and it's only a couple of months since I finally came off Ciclosporin completely.

    Again because of my prolonged immuno-suppression I only started my first innoculations a couple of weeks ago, so it will be another 12 months by the time the course of jabs is complete. From what I understand they avoid live vaccines and post STC patients only get inactive ones. I've read on one of the NHS pages that patients who've had cancer treatment or an organ transplant may not be suitable for having the shingles jab.

    Fingers crossed when my Aciclovir stops I won't suffer from shingles. I've had enough issues with my skin thanks to the GvHD!

  • So – the shingles fortunately cleared up eventually (though I still get the occasional lingering itch), and now my consultant's keen to try again to get me off the aciclovir in September. I asked whether that was likely to prompt shingles again, and he first said I had a better than 50% chance of it not coming back, before revising it to around 25% of it returning.

    After the pain, itchiness and annoyance the first time around, that doesn't sound like a hugely convincing prognosis, but he did also explain that it was good training for my new immune system to fight the zoster virus in conjunction with the ramped-up aciclovir.

    I also wondered why I got shingles and not chickenpox, given the effective wiping out of my old immune system with all its learnt immunities. Apparently the zoster virus hides in nerve cells, which don't get hit by the chemo etc.

    Keeping fingers crossed for September, if I do come off the aciclovir again! Meanwhile I've had two out of three batches of my childhood immunisations. Apparently they're changing the rules so now after two years SCT recipients will be able to have some live vaccines as well (I can't remember which).

  • I'm back off the aciclovir again today, so fingers crossed my immune system's stronger and can keep the zoster virus away by itself this time... Apparently the chance of it returning after coming off the anti-viral meds would reduce with time (as my immune system would be getting stronger), BUT the sooner I come off the anti-virals, the more quickly my immune system can get stronger.

    So here we go...
  • George

    Good luck now you are off the aciclovir, things do improve, it's just takes a long time.

    On an earlier question you raised about the childhood vaccines, I had most of mine just over 12 months post transplant. I should have had a gap of about a further year for the final vaccine, the live MMR one. The nurse at my local GP's didn't want to give it to me because I wasn't a child! This caused a delay until my consultant sent her a nice letter. There were a couple of other deferments when I had flu, a virus and a cold. I had the vaccine 3 weeks ago without any ill affects. I have 5 grandchildren whom we have contact with a lot so it was important for me to have the MMR vaccine. As with everything you have to be guided by your own medical team.

    Keep up the good work on the stairs!

    Best wishes, Peter.

  • Hi, my daughter had her transplant in August and everything is going well. She came off the aciclovir a few weeks ago and now has shingles. She has been readmitted to hospital for intravenous anti-viral. The really good news is that she has received the results of her bone marrow biopsy which shows the leukaemia is undetectable. However, her haemaglobin levels have dropped from 93 to 76. The doctor thinks it is probably due to the shingles. Has anyone else any experience of hb levels dropping after shingles?
  • Hi Tillby,

    Boo to shingles! Great to hear the leukaemia is undetectable, though :-D

    I don't remember whether my Hb was affected by the shingles, but I did feel generally unwell and lacked energy, so I wouldn't be surprised to know that it was down.

    Good luck to your daughter. I found calamine lotion helped a bit with the itching. Otherwise it's annoyingly something that just seems to take time (and anti-viral meds, of course) to clear. It's a great relief when it does! I still have a lingering 'itchy patch' at the top of my arm, but it's not a big annoyance.

    All the best,
  • Hi George, Emma continues to be treated with anti-virals, has been in hospital for a week now. The docs seem a little puzzled because it has appeared on her right arm now which is the opposite side to where it started ( left side of back). Apparently it is usually confined to one side. Also, Emma misunderstood a registrar and thought she was being told news of the bone marrow being undetectable but it was the blood test. Has been told today that a small amount of leukaemia is detectable in the marrow after all. Will know more tomorrow but feeling deflated.
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