Shingles: Has anyone had shingles? I've been hit... - CLL Support

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Shingles

sallylou profile image
8 Replies

Has anyone had shingles? I've been hit with it, I havent had any treatment for my CLL, it's been 11 years. I need to know what to do about the shingles pain. In the almost 3 week.

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sallylou profile image
sallylou
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8 Replies
Bribin profile image
Bribin

Sally Lou. How I sympathise with you. My experience of Shingles was prolonged and painful. Over 4+ weeks TRAMADOL dulled the pain but brought with it constipation and fatigue. I wish I had something more encouraging to add other than it will go away. I hope for you, that it will soon be just a nightmare memory. John

Edit: When you recover actively seek out the Shingrix vaccine.

lankisterguy profile image
lankisterguyVolunteer

Hi sallylou,

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Shingles is terrible for all of us "older" folks and especially us with CLL. Unfortunately there are few treatments beyond the standards of acyclovir (Zovirax), famciclovir (Famvir), and valacyclovir (Valtrex) taken in massive doses 3 to 5 times per day. Your doctor should have started them early after the first symptoms. Palliative treatments with pain medications may help- but get medical help. Avoiding long term damage is extremely important.

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If you want to read our past 329 posts with the experiences of our members please go to this list: healthunlocked.com/cllsuppo... or you can find some of them in the box on this page labeled "Related Posts" (upper right column on computers and way below on mobile devices).

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Then after this shingles event subsides, as Bribin says, please get the two Shingrix shots - if you haven't already, also talk to your doctor about taking one of the antivirals in a low prophylactic dose. Unfortunately shingles comes back often for many of us.

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Len

Anon2024 profile image
Anon2024 in reply to lankisterguy

PLS define massive doses of Valtrex?

Skyshark profile image
Skyshark in reply to Anon2024

800mg 5 times a day. cf. 400mg twice a day as a preventive measure.

lankisterguy profile image
lankisterguyVolunteer in reply to Anon2024

goodrx.com/conditions/shing...

The usual valacyclovir dose for shingles is 1 g by mouth 3 times a day for 7 days.

Acyclovir isn’t absorbed as well as valacyclovir, so it has to be taken more frequently. The usual acyclovir dose for shingles is 800 mg by mouth 5 times a day for 7 to 10 days. Severe infections may require intravenous (IV) treatment.

You can take valacyclovir and acyclovir with or without food. If they upset your stomach, try taking them with meals or a snack. For both medications, your recommended dosage may be lower if you have kidney problems.

AussieNeil profile image
AussieNeilAdministrator

Here's our pinned post on shingles.

healthunlocked.com/cllsuppo...

As lankisterguy says, it's very important that you start a shingles antiviral as soon as possible to reduce the time you have to endure the pain. Prompt use will also hopefully prevent long term complications.

The pain can be excruciating but does improve. Just try and be patient. I found the expense of consulting with a pain specialist well worth the cost. They have a better idea about what may work, but besides pregabalin and gabapentin, it's experimental. You need to find what specifically works for you!

Neil

Hazel33 profile image
Hazel33

Having experienced shingles I can almost feel your pain. It was excruciating for me. It seemed to take ages to clear with all the usual meds, whether it takes longer because of having CLL I can’t say. Have you had the Shingrix vaccine?

I wish you better, and hope the pain goes away. Hazel

Phil4-13 profile image
Phil4-13

sallylou, let your doctor know. Usually by my 2nd day on valacyclovir, pain is manageable, 500 mg twice a day for only3 days. For my discomfort, I go to NSAIDS and coffee, and a good book to "put" my mind in a better place. It takes a good 2 weeks from the first painful blister for me to feel more myself. It's no fun! I was prescribed to take one a day to suppress shingles occurring, but into my 3rd month, I started to feel depressed and had cloudy thinking and my legs hurt. I stopped, told my hema/oncologist and he told me, "Ok". So that idea is a "no-no" for me. I wish you an easy time to find the right protocol for you. 🙂 Sandra

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