Shingles

[Alfiebhoy]

My husband has had really bad shingles for two weeks now, the rash is clearing up however he's still in terrible pain, he was given Acyclovir and he's taking co-codamol for the pain. He's on 200mg venetoclax daily, he had to drop his dose as he wasn't tolerating 400mg daily, he will be two years on venetoclax in December, my question is, I've read some posts on this forum suggesting he should stay on a daily dose of Acyclovir, and should he get the shingrix vacine and how long should he wait, he is seeing his consultant in two weeks .

[lankisterguy Volunteer]

Hi Alfiebhoy.,

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Yes to all your questions. Shingles is the bane of our CLL existence and all that you suggested will help lower the potential for a future reoccurrence. The NHS may have rules about how soon he can get Shingrix,

nhs.uk/conditions/vaccinati...

england.nhs.uk/2023/07/nhs-....

and NHS may have their own rules on daily prophylactic dosing - see

nhs.uk/medicines/aciclovir/...

But it will likely be one tablet, 400 mg daily .

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Beside the pain and suffering from most outbreaks, permanent nerve damage is possible, especially peripheral neuropathy, which can affect the ability to walk.

Here is a link to the 496 times Shingles was discussed previously: healthunlocked.com/cllsuppo...

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Len

[Alfiebhoy in reply to lankisterguy]

Thank you for your advice I will have a look at the links x

[Fran57]

Hello. Firstly, I’d like to offer my sympathy to your husband (and you!)… my husband, who has CLL, had shingles a few years ago…and he found it extremely painful.

As for the Aciclovir, it seems to vary… we moved house nearly a year ago and so changed consultants. The consultant before said to take Aciclovir daily, but this one immediately said to stop taking it and just have some ready to take if he were to get any symptoms of shingles ( and then contact her).

Paul is also on Venetoclax (300mg) … we’re hoping he can stop at 2 years, but that seems to be up for debate…and at the latest appointment I asked about the Shingrix vaccination and she said to get it when it is offered.

I hope that helps a bit,

Fran 😉

[dogsrule70 in reply to Fran57]

I would definitely get a second opinion about the advice to not take Acyclovir daily as a preventative.

[Fran57 in reply to dogsrule70]

Thanks 😊

[Quarry]

I am on daily Acyclovir, following shingles around 2 years ago - high dose for a few days to tackle it and now one tablet a day. So yes. And you have prompted my to ask about the vaccine at my next consultation (I assume you don't need the Acyclovir after vaccine) - thank you!

[dogsrule70 in reply to Quarry]

I had the vaccine and still had a severe case of shingles requiring a 2-week hospital stay. I am now on a daily dose of Acyclovir as a preventative.

[CLLerinOz Administrator in reply to Quarry]

As reported in our pinned post about vaccinations and prophylactic treatments, “A brochure for GPs produced by Oxford University Hospitals in the UK recommends "If a [CLL] patient has a history of shingles, then they should still receive lifelong Aciclovir as secondary prophylaxis in addition to the Shingrix vaccine."

healthunlocked.com/cllsuppo...

CLLerinOz

[Quarry in reply to CLLerinOz]

Ah, many thanks

[OWLS26]

Hi Alfiebhoy, I do sympathise having suffered the pain of shingles. He may well need stronger pain relief, I use a combination of pregabalin, codein and paracetamol. I was in hospital with the pain and I was given oramorph which gives quicker relief.

[Big_Dee]

Hello Alfiebhoy

I took 15-20 minutes soaking baths in warm water with one cup of baking soda and one cup of Epsom salts. This dried up blisters and greatly reduced red swelling in a week. Nerve pain was gone in 3-4 weeks. Doctor also told me to wait at least 3 months before getting Shingrix vaccine. Blessings

[skipro]

Typically a medication called gabapentin is the most often recommended medication for the pain.

Steroids can also help.

I had shingles a few years ago and started gabapentin immediately.

Hang in there.

Skipro

[AussieNeil Partner Administrator in reply to skipro]

The most likely to be effective drugs for the treatment of shingles pain and Postherpetic Neuropathy (unfortunately not guaranteed) are pregabalin and gabapentin. Also unfortunately, there isn't an agreed recommended means of transitioning between them if one doesn't work. Suddenly stopping these drugs can be risky - most concerningly there's an increased seizure risk.

I reached out to both my GP (PCP in the USA) and CLL specialist when I developed shingles. My CLL specialist said my shingles pain should be managed by GP, who prescribed gabapentin, which didn't work that well for me. That's when my CLL specialist belatedly informed me that pregabalin worked better for those with CLL in experience of my haematology clinic specialists, so I decided to make the transition. I opted for slowly decreasing the gabapentin while slowly increasing the pregabalin and that transition went okay. The pain still wasn't being managed by the maximum recommended daily pregabalin dose (600mg), even with the support of a range of other pain medications, including opiods. My GP thankfully allowed me to increase my daily pregabalin dose to 900mg while keeping an eye on my liver and most importantly, kidney function test results.

The amount of pregabalin and gabapentin that can be safely tolerated without risking kidney damage decreases with age, while the risk of developing shingles increases with age. That's why it's so very important to do what we can (Shingrix vaccinations, antivirals), to prevent a shingles outbreak.

Neil

[HopeME in reply to skipro]

I give my dog gabapentin before grooming to calm him down 😀. It was prescribed by the vet. I’ve heard it can be used for humans, too.

Best,

Mark

[bennevisplace]

In my experience, which includes three episodes of shingles, none of the three arms of the NHS responsible for my care were up to speed with prescribing Acyclovir as prophylaxis for a stage 4 CLL patient or one (like you) in treatment.

In my opinion your haematologist should prescribe you 800 mg/ day Acyclovir, or at least write to your GP telling them that's the dose you need until further notice.

I am on 800 mg/ day, in principle for life, even though I have also had the double Shingrix vaccination.

In your case, I would leave Shingrix until well after treatment is finished. It's Acyclovir your husband needs to continue.

[Alfiebhoy]

Thank you everyone for your comments, very helpful and lots of great advice x