Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

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

Shingles

Hello all,

I got an early Christmas present this year - I've been suffering from a bout of shingles for the last three weeks. It has affected my mouth, cheek, nose and eye. The rash has now resolved but I still have a sore mouth and my skin where I had the rash is desperately itchy. I am 28 months post transplant and have generally been fit and well since coming out of hospital. I am conscious that i have been burning the candle at both ends this year with early starts and long days at work and maybe have been rundown as a consequence. Has anyone else suffered post herpetic itch and if so how long did it take to resolve?

Merry Christmas!

Rob.

Comments

  • Hi Rob, I hope you had a good Christmas and weren’t too itchy.

    I can’t say I’ve had any problems with shingles that I’m aware of. I had skin GvHD and I do still suffer from itchy skin occasionally, and the back of my thighs seems to get quite spotty at times but it doesn’t sound anything like you’re suffering from.

    Hopefully your rash is improving and getting less irritable. It’s not something I know a great deal about but maybe others do. Are you treating it with anything, perhaps to reduce the itching at all?

    I hope it gets better soon and wish you all the best for the new year.

    Steve.

    RobA
  • Hi Steve,

    Happy New Year. Thanks for the reply. The rash has now gone but I am left with some lingering after effects. My skin has been desperately itchy, my eye is watery and light sensitive and my mouth is very sore but without any visible ulcers or inflammation. Apparently shingles affects the nerves and my symptoms are probably down to some nerve damage in the area. This does heal with time in the majority of cases apparently but for some unlucky people the damage can be permanent! Fingers crossed this won't be me!!

    Rob.

    Dieseldrinker62
  • HI Rob,

    I hope you have had a nice Xmas. I am sorry that you have had shingles, as you have experienced it can often be very painful. It is one of the more common viruses that can occur after a transplant even as far out of transplant as you are and it will often develop if you are rundown. It is treatable and the symptoms that you are experiencing should resolve but it will take time.

    As you have correctly said shingles affects the nerves so the area that is affected will be extra sensitive for a while, this can also be aggravated by temperature so this time of year when it is cold can make it feel more sensitive.

    It will get better but unfortunately will take time. I hope things improve for you soon and you are taking some time to rest, overdoing it will slow down the recovery and can cause it to reoccur again so please bear this in mind if you think this was a factor.

    Wishing you all the best for the new year.

    Hayley

    RobADieseldrinker62Peterf
  • Thanks for the reply Hayley - it was very reassuring.

    Things are improving slowly. My eye is less sensitive but I need to wear sunglasses at work when I get a flare which has caused a few odd looks. My skjn is also settling down but i still have moments where I just need to scratch. I just need to be patient and as you say not push myself too quickly.

    Happy New Year to you too.

    Rob

    Dieseldrinker62
  • Hello all,

    Just an update on this. I contacted my transplant centre today in regard to Covid-19 and mentioned to my Nurse Transplant Coordinator that I had shingles before Christmas. She asked if I was still taking Aciclovir as this was recommended for a year (200mg 3 times a day) after developing shingles. Unfortunately this was never communicated to me so I haven't been, but I have now spoken with my GP to arrange a prescription.

    Potentially something to bear in mind if you do develop shingles.

    Regards,

    Rob.

  • Hi Rob
    This is my first ever post so I hope it is helpful!
    I had shingles 12 months post transplant in August 2018. Pretty bad on my left side, down my arm and even under my finger nails. I was in hospital for 10 days with I/v aciclovir. The pain at the time was occasionally intense and I was prescribed Gabapentin and Amitriptiline (for what I described as the electric shock pain).
    I stopped taking the Amitriptiline quite quickly and cut back the Gabapentin gradually over about 6 months. Since then I have just taken Valaciclovir but by coincidence today am changing to aciclovir.
    The pain definitely gets better. Indeed it is the itching that I mainly still suffer from but after everything else we have all gone through I don’t see that as too bad.
    I would say it is worse when I am tired, especially in the evenings, but it never stops doing anything (which probably doesn’t help).
    I guess if the pain is still a concern maybe look at Gabapentin. Not sure there is anything to do about the itch. I think that is just the nerves repairing themselves?
    I hope this helps.
    Peterf.

    RobADieseldrinker62
  • Hi Peter,

    Thanks for your post. It sounds like my shingles was mild in comparison then! My itching has now completely resolved. I just have a few patches on my face where I have a little numbness, almost like a local anaesthetic wearing off. I guess at around 3 months this is quite normal; as you say my nerves are repairing. My doctor suggested Gabapentin but the potential side effects sound worrying so as my symptoms are now relatively mild I decided not to take it. I am taking Aciclovir again though - I don't want a repeat!

    Regards,

    Rob.

    Dieseldrinker62
  • I was prescribed acyclovir for 1 year after my stem cell transplant in June 2016. It was the last of the drugs that I was on during that year to be stopped and at last I was free of any post transplant drugs. About 2 months later I got shingles bad enough to be hospitalised for 3 weeks where amongst other drugs I was given IV acyclovir. Since then my consultant says I will be taking acyclovir forever, to prevent a repeat.
    I still have some numbness (legs and feet) and other symptoms but milder.

    Bticks

Sign In or Register to comment.