CLL Support Association

Have you experienced shingles activation/s?

Tick all which may apply and feel free to add your experiences within replies below answers

229 voters
V…0100200No NeverYesfollowingCLL diag…YesfollowingCLL trea…Yes it wasnot treatedwithin 7…
AnswerVotes
No Never134
Yes before CLL diagnosis52
Yes following CLL diagnosis31
Yes during CLL treatment7
Yes following CLL treatment22
Yes it was treated within 72 hours41
Yes it was not treated within 72 hours24
Yes it has caused post herpetic neuralgia (PHN, Postherpetic neuralgia is a pain that persists in some people who have had shingles.) 27
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Please share your shingles experiences with a comment below.

Also we welcome your help with the December quality of life questionnaire sent out to CLLSA members and posted here healthunlocked.com/cllsuppo... this will aid CLLSA identify some of the key ‘quality of life’ (QoL) issues our members with CLL experience.

There are only four questions, you can answer those here: surveymonkey.com/s_thankyou...

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About three years after CLL diagnosis - noticed rash developing on Sunday morning - by lunchtime all over chest and back - got to doctor on Monday - given aciclovir tablets which cleared it up within a week - no 'explosions' of skin and luckily no painful after effects. Would be very happy not to have it again though!

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This can be very serious. For me a valve in my throat does not work which means I have a tube through my stomach wall. However this has kept me alive for the last ten years. Aciclovir can not always prevent shingles but I take it every day.

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I consider myself very lucky. About six months before I was diagnosed with CLL I spend one Saturday in so much agony in my back that they took me into hospital. They didn't have a clue what is was, but the next day it was gone. About a week later all the area that had been so painful was covered in itchy blisters. As it was September time, a bit damp but warm, and I had been sleeping with the windows open, I thought it was gnat bites. When they didn't go after about 4 days I went to the doctor, who told me it was shingles. I ached in that area occasionally, and if I get back ache, it's always in that area, but apart from that, had no pain with it. Hearing stories from other people about the pain they had with shingles made me realise I could have had that first bad pain for a long time, so how lucky was I !!!!!

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I had shingles reactivation of cranial nerve V (5), the middle trigeminal, (Herpes zoster of maxillary branch). that runs into the face, upper jaw and eye lid... I was on Valtrex within 18 hours. This was after round 3 of RCHOP.

The pain was excruciating... like the worst toothache ever, in all teeth in one side of my upper jaw... shooting 'ice pick' pain into my temple and eye.

It has been over a year and I still have total numbness in this area, and tooth pain on occasion, and my eye waters...

I suffered from palsy, drooping muscles, which effected my eye lid and cheek, but this passed in a few months and eyelid surgery/tuck was not necessary...

The idea that antivirals prevents shingles reactivation is a common misconception. Antivirals work on cells that have shingles reactivated, and help to limit the outbreak, they don't prevent it.

I was on Valtrex for about 4 months post reactivation.

In my case the nerve damage is probably permanent, and now effects my taste as well.

Zoster reactivation can be extremely serious, if you even expect it, please consult your doctor immediately...hours matter...

Zoster can cause blindness...

Here is an excellent overview of Zoster

emedicine.medscape.com/arti...

PLEASE remember... Zostavax vaccine for shingles is NOT RECOMMENDED for CLL patients it is a live vaccine and may

put you at risk for reactivation... and at best in the 60+ age group it is only 52% effective... in healthy people.

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I had a bad case of shingles thirty years ago and I regularly have pain and the occasional-painful eruptions on my body trunk.Prior to diagnosis with CLL I attempted to secure from a variety sources drugs to ease the pain and prevent it spreading but I was told to let my natural immune system deal with it, since diagnosis I have not bothered my GP as he is generally reluctant to prescribe any drugs. Watch and wait seems to apply to my CLL and any other conditions I visit my GP for. I am thus very reluctant to visit my GP.

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Oh,Dave, you need a new doctor! Just my opinion, but I've dumped several along the journey of getting diagnosed and then dealing with the diagnosis and now have a team that I'm very happy with.

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Got the shingles 3 months after treatment 3 weeks earlier they had stopped the drugs to prevent it. Monday just felt like I pulled a muscle in my chest as I had been for walk that night wife found me sweating stripped down and a big rash went docs in morning in so much pain gave me more drugs but was left with pain for 18 months before it stopped although I still get pain from time to time. If you can have prevention drugs do it. More so this can come back.

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I was diagnosed with CLL approx 15 years ago. Had shingles with blisters around my ribs 3 years ago just 5months prior to treatment. Just awful pain-had to take a cocktail of painkillers to control it. Pain has persisted ever since on and off in varying degrees of severity.

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I had shingles in my 30's prior to CLL. It hurt like hell. Although given painkillers these aren't that effective. After treatment I again had shingles. Was given morphine for the pain but really its only time that heals. The skin around that area still feels funny but I have had no long term damage.

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my husband who has had cll for about 7 1/2 years, had shingles 2 years ago he received treatment on the day the rash came out,but 2 years on he still has post herpetic pain.

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I developed shingles on my face, particularly around my right eye. Unsightly, itchy but not too painful. Responded to treatment with Aciclovir within two weeks. No repetition and no pain but a small lump remains on my eyebrow. The outbreak occurred after learning of my Cll diagnosis followed by a very poor first hospial consultation. I believe stress was the cause.

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I had shingles 3 years after chemotherapy and eight operations, think the body just had too much to deal with and hence viral reactivation. Affected area was right shoulder and right arm including the hand. Won't post the pictures as there is no need to alarm everyone, we all react differently. The acyclovir had no impact despite being taken within 24 hours and painkillers had no impact on that special neural pain. Bad experience. Lost the use of right arm for two years and it is still weak.

Subsequent reactivation has been much better controlled with valaciclovir (VALTREX) but I had to negotiate with the doctor to get it. Post hepatic neuralgia still with me 3 years later.

Please be alert for the symptoms and take shingles seriously.

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Hi Im new to CLL my second appointment had my specialist for the first time run blood tests targeting CLL itself. In the mean time having a chest infection that just wouldn't go away with the strongest anibiotics my respitory specialist is checking for lung cancer next week insirting a camera and taking a biopsy. CLL is in the back of my mind not in the forfrount till I get the results of that. Im sorry for not logging on sooner but I had a computer that just wasn't playing ball with me.

Brad7

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Hi Brad7,

Good to see you back on line. You are more likely to get a response if you ask a question at the community home page i.e. at healthunlocked.com/cllsupport , rather than responding to an unrelated topic (shingles in this case).

With respect to your chest infection, has your specialist done a culture from anything you've coughed up to identify what bug is causing your infection?

Neil

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AussieNeil Talking of unrelated Topics I would love to no as a strong photography person where did you photograph the stork in the wet lands? I will be getting my first blood tests aimed at levels in the blood in two weeks my specialist seems in no hurry to obtain them I suppose with W&W he sees it as no urgent tests. In relation to my chest infection culture of phlem put it down to bacteria causing problem, but All the strongest antibiotics were used to no affect.

Now he beleives its something else, and first will check for cancer taking a camera down the lungs and obtaining a biobsy to rule it out

Brad7.

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I think you are referring to a white heron, which I took in wetlands about two km from my home. Hope you get some helpful answers from your latest tests.

Neil

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Votes
Yes following CLL diagnosis
Yes following CLL treatment
Yes it was not treated within 72 hours