A Patient’s Guide to Shingles - Prompt treatment is crucial to avoid severe neurological complications.

[Jm954]

Shingles isn't contagious like chickenpox; you can't directly catch shingles from somebody else who has it. Instead, shingles occurs when VZV in your body "wakes up" and reactivates in nerve cells.

Shingles isn't just an adult version of chickenpox. First of all, the appearance is different. It's usually one-sided, with bands of skin rash often confined to either your left or right upper torso. Shingles is painful and the itch is intense and long-lasting.

The impact of shingles can extend beyond skin and scalp rash. If it also affects one side of your face, that can include the eye, posing a threat to your vision. In some cases, you might not even have a rash, as when shingles affects your stomach and gastric system.

In some cases, shingles can leave you with long-lasting effects. Postherpetic neuralgia is a potentially devastating shingles complication. With PHN, your brain and spinal nerves could be damaged. Pain can linger for years. Fortunately, antiviral drugs can treat shingles in its early stages to help avoid complications.

Lots more information about Shingles here - a must read for us CLLers

health.usnews.com/condition...

Take home message is: if you even suspect you might have shingles – you don't see the blisters but you have unexplained pain or itch around your body, most often of the trunk or around the eye – you should see your doctor immediately to get started on antivirals.

Jackie

[AussieNeil Partner Administrator]

Thanks Jackie and for your follow-up post:-

A Reminder of the Symptoms of Shingles including the pre Rash phase

healthunlocked.com/cllsuppo...

I've also added this post to the pinned post on how knowing more about your immune system could save your life: healthunlocked.com/cllsuppo...

Slideshow: A Visual Guide to Shingles

healthunlocked.com/cllsuppo...

Shingles and post herpetic neuralgia (added 6th August 2022)

healthunlocked.com/cllsuppo...

Member Experiences of the Shingrix vaccination (added 14th August 2023)

healthunlocked.com/cllsuppo...

Neil

[UK-Sparky]

Thanks Jackie a useful reminder

[HaloBears6]

I wish I had read this a week ago, I have shingles now. Started on January 19th & at the end of the week the rash appeared. I didn’t really understand shingles until I just read this article. Thank you for posting.

[Jm954 Administrator in reply to HaloBears6]

I’m so sorry to hear this 🙁. I hope you make a quick recovery

Jackie

[HaloBears6 in reply to Jm954]

Thank you Jackie!

[Polly159]

Not sure if this is the right group as I want to ask about shingles. I'm sure I have them at the moment and will see doc tomorrow to confirm or otherwise. I had shingles about 4 years ago but mainly the rash and a very very little pain. Cleared up fine. This time, however, the rash is more extensive, itchy, hot and painful. The other difference is that I feel as if I've pulled a muscle on my left side (although that pain has almost faded) the major pain is a low level pain around where my left kidney is with, at fairly frequent intervals a stabbing pain that almost takes my breath away. The pain seems a bit better when I stand - but I don't feel like standing! Any advice gratefully received. Thanks in adavance

[MichelleHarris in reply to Polly159]

I had them twice too and second time worse. I was told I was healthy and well and I wasn’t. I believe theres some reason it wakes up. I’d get a comprehensive range of blood tests done including T3 and T4. Hope youre better soon x

[Polly159 in reply to MichelleHarris]

T3 and T4 as in thyroid function? Interestingly I was recently diagnosed with low thyroxine levels (I've been on thyroxine for over 30 years), possibly allowed the shingles to get the better of me? Not sure. The burning of the rash is driving me up the wall at the moment, hope is subsides soon. Thanks Take care Polly

[Jm954 Administrator in reply to Polly159]

Just get to the doctor Polly and some antivirals if you or he suspects shingles. The sooner it's treated the shorter the episode and the better the outcomeall the best

Jackie

[Polly159 in reply to Jm954]

Thanks, Jackie - doc seen, antivirals and painkillers prescribed. The heat in the rash is the real 'sore point', but painkillers obviously help but knock me out. Cold compresses? Doc said only to put moisturiser on it, but not sure if I can do that where (a fairly large ie 3 inch by 1 inch blister has burst) Thanks again Take care Polly

[Jm954 Administrator in reply to Polly159]

You too Polly. I hope it improves soon, I’m not sure about a cold compress on it sounds soothing.

[Walkingtall62]

Thanks Jackie. I did have shingles 7 years ago. Must ask about the vaccine.

[RosettaClapp in reply to Walkingtall62]

I had the shingrix vaccine in Jan this year before I started O+V treatment Im hoping it will keep the shingles at bay .do remember the ordinary shingles jab offered by uk nhs is a live vaccine and as such is not suitable for CLL patients (the shingrix is only available privately in uk approx£500 for the two jabs)

[Walkingtall62 in reply to RosettaClapp]

Hi, thanks for this info. Take care

[AussieNeil Partner Administrator]

Herpes zoster (shingles) was tied to an elevated risk of subjective cognitive decline, an analysis of 150,000 U.S. healthcare professionals showed.

Further to Kwenda 's recent post Shingrix and Dementia healthunlocked.com/cllsuppo... which referenced this study nature.com/articles/s41591-...

medpagetoday.com/neurology/... (registration needed) has just reported another study which found that "In three large independent cohorts, herpes zoster was associated with an approximately 20% higher long-term risk of subjective cognitive decline," Tian-Shin Yeh, MD, MMSc, PhD, of Taipei Medical University in Taiwan and the Harvard T.H. Chan School of Public Health in Boston, and co-authors wrote in Alzheimer's Research and Therapy. alzres.biomedcentral.com/ar...

:

The risk of subjective cognitive decline was higher for APOE4 carriers versus non-carriers among men (P for interaction=0.02) but not women, the researchers reported. The association between herpes zoster and risk of subjective cognitive decline did not differ among people with or without potentially immunocompromising conditions.

"Our findings show long-term implications of shingles and highlight the importance of public health efforts to prevent and promote uptake of the shingles vaccine," co-author Sharon Curhan, MD, of Brigham and Women's Hospital in Boston, said in a statement.

Recent studies have suggested that dementia risk is lower medpagetoday.com/neurology/... in people who had a shingles vaccine. Among U.S. older adults, the recombinant shingles vaccine (Shingrix) was associated with a larger reduction in dementia risk medpagetoday.com/neurology/... than the live shingles vaccine (Zostavax).

Earlier studies also have linked viral illnesses medpagetoday.com/neurology/... with subsequent dementia. Human herpesvirus 6A and human herpesvirus 7 have been found in postmortem tissue of people with Alzheimer's disease medpagetoday.com/neurology/... at levels up to twice as high as non-Alzheimer's disease samples, for example.

Researchers have suggested that herpes simplex virus 1 (HSV-1), coupled with an APOE4 gene medpagetoday.com/meetingcov... , may raise Alzheimer's risk. Based on early HSV-1 research, a phase II trial of the antiviral drug valacyclovir clinicaltrials.gov/study/NC... (Valtrex) in Alzheimer's disease is underway.

Two Shingrix vaccines, 2 to 6 months apart, can spare you PHN pain for the rest of your life and possibly reduce your risk of cognitive decline. Worth thinking about, now that CLL treatments are giving us the opportunity to live out our normal life expectancy!

Neil