Zosteriffic...4 months with shingles! - CLL Support

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Zosteriffic...4 months with shingles!

Cllcanada profile image
CllcanadaTop Poster CURE Hero
8 Replies

This postherpatic neuralgia is REALLY becoming tedious...

ncbi.nlm.nih.gov/pubmedheal...

And just in case you are wondering...

The shingles vaccine (Zostavax) is NOT recommended for CLL patients...it is a live vaccine...No live vaccines for us...

From a CLL Expert...

'Professor John C. Byrd, (M.D. D. Warren Brown Professor of Leukaemia Research Professor of Medicine and Medicinal Chemistry Interim Co-Director, Division of Haematology-Oncology, Department of Internal Medicine Associate Director for Translational Research, The Comprehensive Cancer Center The Ohio State University Columbus, Ohio, 4321)

"I have seen a lot of questions about vaccines that have live vaccine components. In particular, the varicella zoster virus vaccine which should NOT be given to CLL patients due to their immunocompromised state. Some practitioners are mistakenly giving this and it places CLL patients at risk. CLL patients can be administered vaccines that are NOT LIVE (such as the pneumovax). "

~chris

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Cllcanada
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HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Hope you gain some relief soon Chris. thanks for the post.

here's some more: cllsupport.org.uk/Shingles.htm

Again:

“PLEASE NOTE THAT THE SHINGLES VACCINE CONTAINS LIVE VIRUS AND SHOULD NOT BE USED FOR CLL PATIENTS OR FOR ANYONE WHO IS IMMUNE SUPPRESSED.”

Nick.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Me too Nick... this link works... darn period ...

cllsupport.org.uk/Shingles.htm

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Thanks again ( :

MaudMarie profile image
MaudMarie

Chris, so sorry you are still plagued by PHN. I'm still in the same boat but the Topical Electrical Stimulation helps the most. Constantly grinding my teeth unconsciously with the neuralgia, use mirror therapy to relax the face and remind the brain that I want it to react normally again. It's a vicious cycle. And impossible to explain to anyone who hasn't experienced it. I've also learnt to self-hypnotise which gives some temporary relief too. Hope you can find a strategy to give you some relief.

Best wishes.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

MaudMarie... do you know which cranial nerve was effected in your case.

MaudMarie profile image
MaudMarie

Cervical nerves C5,C6,C7,C8 and T1 - brachial plexus which provides sensory and motor inner action to the upper limbs, radial and ulna nerves also affected. I was fortunate not to have cranial nerves affects like you. My facial tension and tooth grinding was due to the stress of the constant neuralgia. The principle of TES applies in both cases, the low pulse rates work to reduce PHN and the higher rates work to reinvigorate the deep red muscle. Takes time but worth it.

A very short course of Pregabalin also improved things whilst Gabapentin was ineffective.

Best wishes

Cllcanada profile image
CllcanadaTop Poster CURE Hero

I feel fortunate...only Trigerminal maxillary nerve (CN V2) was involved in my case... still nasty...

Thanks!

jangreen profile image
jangreen

Hi I too have had shingles post chemo, it really set be back. Time is the greatest healer, but it does take a lot of time and in between its hell. Meditation helped as did strong painkillers. Best wishes.

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