Shingles : To be for warned is to be for armed - CLL Support

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Shingles : To be for warned is to be for armed

Myrddin profile image

Anyone who has had chicken pox can suffer from shingles , 1 in 4 of the population. We are more likely than other to get shingles.

Worth knowing what to look to ensure you get anti virals asap to reduce the long term effects.

Critical to get prompt attention if the rash is near the eyes. If in doubt seek medical attention. There are plenty of photos online that give a flavour of how the rash develops.

17 Replies
AussieNeil profile image

Thanks Myrddin for this warning. I can feel the burning sensation just looking at that image :( . As you say, getting onto an antiviral ASAP is critical. It should reduce the severity of the outbreak too and avoid a great deal of what can be severe pain for which pain killers don't necessarily provide relief.

Depending on the health system where you live, you may be able to speed the process by having a script on hand as shingles seems to invariably strike on the weekend... In Australia a script is current for a year from when it is written. Antivirals can be expensive but the cost to you may vary greatly depending on your country, private and public health insurance, etc.

It's definitely worth becoming familiar with typical symptoms of a shingles outbreak and discussing the process of getting prompt access to a script with your doctor/specialist before you need it.


Cllcanada profile image
CllcanadaTop Poster CURE Hero

Case in point... I was on Valtrex within 18 hours of the first sign of treatment related shingles reactivation and now over a year later I still suffer from palsy, and the pain of Post hepatic neuralgia.

While mine occurred during treatment, it is important to understand singles can occur at any time when you have CLL.

I also saw an opthamologist immediately due to concern for my lower eye lid which drooped. My shingles travelled down the Trigeminal nerve V2, into my upper jaw, teeth and wiped out half my taste buds.

Shingles is extremely nasty. Prophylactic antivirals do NOT prevent an reactivation but they do help to limit it.

Shingles of the optical nerve or near the ear is extremely serious... get help immediately.

Here is a good overview...

PaulaS profile image
PaulaSVolunteer in reply to Cllcanada

Chris, are you saying if you'd got onto Valtrex even quicker (than 18 hours), you might not have suffered the palsy and neuralgia? I can see how VERY important it is, as Neil and Newdawn have said, to recognise the symptoms and work out how to get a script asap, including on weekends.

P.S. Did your taste buds ever recover?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to PaulaS

No, a few hours wouldn't have made much difference, the damage was done. Prophylactic use of antivirals in CLL treatment is not done in B.C., Canada. I'm a very rare case... two 6 months rounds of treatment back to back.

Taste buds...Nope... I taste on the left of my mouth, the right side has no taste except for acidity...

this is my new reality... so is the numbness and occasional pain... gotta live with it... thankfully I didn't need a surgical procedure to tighten my lower eye lid, but is doesn't close too well...

PaulaS profile image
PaulaSVolunteer in reply to Cllcanada

Yes Chris - you are certainly a very rare case... I expect the doctors use you as an "interesting example" to their students...

It must be strange only tasting properly on one side of your mouth, and just acidity the other side. Hard to imagine that.. And the eye problem as well...

New realities of life... I suppose lots of us are having to adjust to those, though most not as drastically as you.

Thanks again for all you give to this site,


Hi chris and Neil

sorry to sound dim but should people with CLL be asking for a antiviral BEFORE contracting shingles or after they see the first signs of it? Thanks Dave

AussieNeil profile image
AussieNeilAdministrator in reply to Dave3579

Newdawn is right Dave and as I said, it depends health system where you live. It also depends on the relationship you have with your doctor and what they consider appropriate. I've been provided with antibiotic prescriptions to have on hand for use prior to dental work and to deal with secondary infections that can accompany a respiratory infection. I appreciate the trust involved and the fact that it saves me from having to brave the doctor's waiting room at short notice.

CLL patients in the USA don't seem to have problems obtaining antiviral scripts to have on hand. When I raised the question of having an antiviral on hand for shingles with my haematologist, I wasn't told that it wasn't possible, but that I'd be far better off financially to have one prescribed when I presented with shingles, as my haematologist or doctor could then get approval for it to be dispensed at a Health Service subsidised cost. Given what I know about shingles, I would have pushed for the script despite the likely additional cost but for the fact that I know I can get prompt access to my doctor and haematologist in an emergency. Others may not be so fortunate.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Dave3579

You can ask, but you probably won't get them in the UK. There is little evidence that prophylactic antivirals prevent shingles... Show signs, like blisters absolutely. I took a 'Selfie' sent to the oncologist on duty, one hour later the prescription went to my pharmacy...this was at 1 a.m. No buses, the drugstore was closed and didn't open until noon on Sunday... best I could do... I lost 12 hours... sh*t happens... that's life.

But gotta love your iPad... without it I double it would have been expedited to the extent it was... 'self camera' was wonderful!

Blisters on the end of your NOSE go to emergency IMMEDIATELY

Might be Herpes Zoster Ophthalmicus. You need to be familiar with this... or perhaps loose the sight in the eye.

Newdawn profile image

I was initially confused about that suggestion Dave because I can't see an NHS GP providing a prescription as a precaution for fear of inaccurate self medicating. But reading Neil's advice again, it says, 'discuss the process of getting prompt access to a script with your doctor or specialist before you need it' which I think means familiarising yourself with how to access the help quickly rather than already having the prescription ready in the drawer!

And knowing how to kick start the process quickly in those circumstances is good advice because timely intervention seems to be vital.


ygtgo profile image
ygtgo in reply to Newdawn

I broke out in a rash on my back a few days ago - Due to the advice from this site, I contacted the GP surgery, and asked for an emergency appointment.

I saw the GP and explained the need for me to be checked as time would be the enemy if it was Shingles ... Thankfully it was not shingles, and I was given a cream for the rash.

I agree that it would be extremely unlikely to get a precautionary prescription ahead of having shingles, but at least I was seen within 90 mins, and a GP has now been made aware of the need for vigilance for CLL patients.

If I had to get quick attention outwith the GP surgery open hours, it would be a real problem.

The need to act quickly is part of the reason for starting the thread. I agree it is unlikely you would get a prescription ahead of actually having shingles. If you discuss the issue with your GP it would be on your records- that might help expedite things -Worth finding out what your GP recommends

In my case I told the GP that I had shingles- he took one look and confirmed my diagnosis. As the rash developed over a weekend it was more obvious what it was but time had been lost. If you know what to look for most people should be able to self diagnose early and just need confirmation and the sooner the better.

Taking a photo of rash/spots would be a good idea but need to decide ahead of an incident where the photo could be sent out of hours and at weekends to get a timely response. Don't want to be trapsing around surgeries/hospitals - likely as not you will not feel like it either nor for several weeks after the rash start and the nasty after effects can last years.

Nasty disease shingles, I was quite young when I had it and am aware that I am not immune from having it again. My partner had it a year or two ago and fortunately he mentioned that he had a tingling in his neck that was irritated by his collar, When I looked at it, the rash was only just appearing, however, taking that into consideration with the tingling effect I suggested ringing the emergency clinic (why do these things always happen over the weekend) who, when I said I suspected shingles asked that he call down immediately to be seen. It was the start of shingles, and whatever he was given to take made him very weary for a while but it seemed to halt the progress of the disease. He did however suffer some discomfort where collar sits on the neck for about a further 6 weeks.

He is not immuno compromised, but he was still lucky to get away so lightly. I think any unusually tingling or feelings should be the first sign to keep monitoring the skin so immediate action can be taken. Treatment is definately not something to be put off until you are sure it is shingles.

As advised in previous posts, it may be worth discussing with your GP how best to get immediate assistance if this should happen to you.


charliegirl profile image
charliegirl in reply to

I first had shingles in my 20s and have had it 4 further times since diagnosed with CLL. Fortunately it's only affected trunk and arm, never face.

I now recognise it as soon as I get the raised red spots and before it gets to the blistering stage. Starting antivirals so quickly means that development of rash has been aborted the last couple of times.

I am fortunate in having a GP who has been willing to give me a prescription for emergency use. I keep a supply at home and always carry carry a supply when I travel. Worth asking for!

To expand on what Bubnjay said about first sings of shingles being a tingling, I would like to offer my experience in hope it might help. I had singles twice, once when I was in my late 30's and then again when I was 60. First time was a mild case with just an itchy rash/ blistering on my ribcage. Second time was serious. It started with a horrible pain over one eye. The pain was on the outside and hurt even more when touched. Had me totally confused. Then the rash broke out. So I would add pain to signs of singles.

PS I do not have SLL or CLL.

Versatis medicated plasters (lidocaine)

There is a piece in the health section of the Daily Mail to-day referring to this as a shingles patch.

I am just wondering if anyone here has heard or tried something like this, if they have been unfortunate enough to have had shingles in the past ?

early this year l got shingles at first l thought it was a brown recluse spider bite(l tend to get these) and by the time l realized it was shingles it was the weekend so had to wait till monday to get to see the DR. l had it for 2 months it was the worst pain l had ever experienced, in the first 2 weeks l could barely eat anything and then it just lingered. l lost my hearing on my right side and my taste buds are so bad its hard to know what food tastes like. l know l have nerve damage the right side on my neck and scalp. The thing that really helps is L-Lysine l take 1000mg a day and it stops the nerves in my neck from tingling. l have yet to find something for the tastebuds

Newdawn profile image
NewdawnAdministrator in reply to leabrit

How thoroughly miserable for you leabrit. Do you have CLL too?


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