Suspected shingles is ALWAYS a medical emergency for us CLLers and this has a very good summary of the pre rash phase. It's very important to take full dose acyclovir as soon as it is suspected, don't wait until you have the rash.
Please read and familiarise yourself with the information, it could save you from nerve damage and a long and painful recovery.
***NOTE***
Shingrex vaccine is the newest vaccine available in many countries, and that it is not a live vaccine and therefore safe for people with CLL.
The article mentions the Zostavax vaccine which is not recommended for us.
I have aciclovir in my medicine box, and always keep it. Current pack is due to expire in October so will be renewed in September. I used to keep a prescription but that needed renewing every 6 months so my GP happy to let me keep it in case, knowing urgent treatment is so very important.
So, are you saying that your GP gives you a prescription for aciclovir 'just in case'? Sounds very considerate, but I'm not sure all (many?) GPs would do it... are you especially at risk of a poor reaction to shingles?
I used to have a prescription but that needed renewing every 6 months. The life time of the drug is years. We are all at serious risk from shingles and frequently health problems arise on weekends or bank holidays when the swift action needed to nip it in the bud is needed. Swift action saves months of pain maybe neuropathy and additional medication.
To me sensible precautions and luckily my GP agrees.
A few years ago I was able to nip it in the bud on my partner before the rash appeared but he was still unable to wear a collared shirt for 2 months. The full attack would have been horrendous. I guess it depends on your GP knowing you are reliable and would not abuse this privilege.
Thanks very much for that advice... I had chickenpox as a kid, but no shingles (yet) - my brother had it, though.I'll contact the GP surgery and see if one of them will prescribe it.
I think to some extent we all are susceptible to shingles. I caught a mild case about 5 years ago and now I am on Ibrutinib I stay on a prophylactic dose. I believe that attack was down to stress, something we all have, especially at the moment.
Like Bub I discussed with my GP having a ‘ just in case ‘ prescription of Azithromycin because many years ago at one of the London CLL meetings I heard Dr Daniel Catovsky suggest it was sensible. I still have on a prophylactic dose for my sinus problems.
Depends on how open to suggestions your GP is but explain that shingles is a side effect it seems of CLL and having a ‘just in case ‘ prescription of Aciclovir saves valuable time. I am on a prophylactic dose because of being on Ibrutinib and also having it previously. I also take a prophylactic dose of Azithromycin usually around autumn and winter to keep sinus problems at bay. Good luck with finding that sympathetic doctor.
Thank you, Colette!I remember one of the docs. gave me a prescription for a powerful antibiotic, 'in case', before a holiday in the Maldives a few years ago, as the chances of getting anything quickly 'over there' were not great.
No it's not if you're immunocompromise you can get disseminated shingles which most primary care doctors here seem to know absolutely nothing about. I have had shingles five times in the last 30 Years Way before CLL I started getting them in my 30s, I'm so tired of going to this primary care group I go to when I have them they don't know what they are. they try to tell me that's not what they are and I know it is they eventually gave me the medicine after they go to a Google search. it's ridiculous. This last new person I saw in the group last week made me go get a blood test, which came back positive. What a waste of time I'm just gonna start going to the urgent care. And then she reported me to the health department because she thinks I'm contagious. Really, she is the only person in all these years who has reported me to the health department, And believes my shingles are contagious. My CLL hematologist always tells me to consult my primary care doctor, even though he gave me a prescription for them two years ago and wanted me to take acycy every day of my life. I said no to that. And yes that pain does come on beforehand a couple of days but every time I have it it's in a different place so I'm not suspecting it. Two years ago it was a back of my head and my eyes on both sides, this month it came on with groin pain which I thought was from cutting the grass and pushing the mower, then I broke out with the blisters all around my lower spine on both sides and my hip. Yes with a weak immune system you will get them on both sides so don't listen to anybody who tells you, you can't.
Thanks, that's an interesting story. I asked the question because in late stage CLL I had a shingles rash plus persistent nerve pain. It was mainly on one side but crossed the median.
Later I had mouth sores - also both sides - which after several appointments, useless medication and a biopsy was vaguely diagnosed as "consistent with herpes virus infection". Later still, a different doctor refined the diagnosis to oral shingles. To this day I can't be certain this is correct, but one thing's for sure: aciclovir cleared both the rash and the mouth sores very quickly. I have been taking it ever since, no further symptoms.
Are usually have good luck with the acyclovir, but this time I got more shingles a week after starting it which was very odd. I had a 10 day prescription now I am on another 10 day. I'm trying to keep them away for two months and then they said I could get the shingrex shot. I did have the oral ones last year also.
You've had a rough history with shingles, which is only infectious via any fluid from the rash vesicles. Anyone exposed to that fluid could develop chicken pox.
All the responses to shingles have been very informative. Like CLL it affects everyone differently. Even after taking the antiviral for a week the rash seemed to still be coming in different area on one side, and it feels as though it is affecting me internally and totally sapping my energy, I am sleeping a lot.
I did get another alternative antiviral medication from the gp but didn’t take it as I felt it was overload. The shingles has knocked me out. I normally have lots of energy.
Getting through to the gp in uk is near on impossible. I’m trying to decide whether to take the new antiviral (day 16 and spent yesterday resting/sleeping ) could it be CLL playing up?
Any thoughts on taking the antiviral now, or is it too late?
The recommended dosage of Aciclovir for treating shingles in immunocompromised adults is 800 mg, 5 times daily, continued until 2 days after encrusting of lesions. bnf.nice.org.uk/drug/aciclo... I'm pretty sure I had only 800 mg per day, and initially a maintenance dose of 400 mg, and I wonder whether your GP has under-prescribed. If your lesions haven't yet formed crusts perhaps you stopped too early? Dosage for 7 days is recommended for immunocompetent adults.
It says that there are no recorded side effects from 'the vaccine' - but do they mean the main one mentioned, which we can't have? (I was recently offered a shingles vaccination by our GP surgery, but when I mentioned CLL, was told it was a live vaccine, so no go.) Is Shingrix also a 'no recoded side effects' vaccine, as far as we know?
Just a little extra info regarding this VERY IMPORTANT & HELPFUL POST:
If a person cannot take A-Cyclovir, then there is also VALACYCLOVIR!
When I first started having symptoms of what turned out to be Shingles, I had a sore place on my scalp. My oncologist looked @ it & did not recognize it as Shingles. Also, I started having sharp, jabbing pains in my ear (on the same side of my body as the sore spot on my head) which made me JUMP every time they struck! I thought I might be getting an ear infection!
It took continued progression of PAIN & ITCHING to send me to the ER! The ER doc knew EXACTLY what it was.
Because it had been allowed to develop & because I already had CLL, I was VERY SICK for a VERY LONG TIME (several MONTHS)! The pain was excruciating & the itch was maddening!
Thanks for that and the reminder to get the Shingrix shingles vaccination which is now also available in the UK for certain groups including people with CLL.Jackie
As well as providing an excellent overview and good advice about Shingles, it also discusses the Shingrix vaccine and the disappointing fact that it isn't yet included in Australia's free vaccination program.
"Shingles can be a painful, debilitating disease and people over 70 are eligible for a free vaccination against it. But the one given on the free schedule is not very effective and the more effective one is costly, and not subsidised."
Note: the free Zostavax® (shingles) vaccine available to over 70-year-olds in Australia is a live attenuated vaccine that is NOT recommended for people with CLL.
Guest: Prof Tony Cunningham, Head, The Centre for Virus Research, Westmead Institute for Medical Research, University of Sydney. Host: Dr Norman Swan
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