CLL Support Association
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Who's had shingles?

Im currently suffering from a really bad case of shingles and have just been refered back to hospital. Im told its a serious condition for people with CLL and can take a while to get over.

Anybody got any first hand info or tips?

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As always got it over a weekend but was only sure on he Sunday night when the blisters started forming, Was instructive as to where the nodes were as they all ballooned. Got anti viral early on the Monday but this was not soon enough to avoid the neuralgia which persisted for a couple of years. Area still sensitive. Got into eye and so visited hospital out of hours but fortunately did no damage.

So be prepared and become familiar with the signs so you can act immediately. I know some keep a course of anti viral handy just in case. Having been mentioned at a CLLSA meeting I had looked up images so knew what it was as soon as the blisters formed - act as soon s possible if you suspect you have shingles. Don't have a the live vaccine !

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Shingles where? The sooner you are on antivirals the less damage will be done and the viral reactivation will be limited...

There are a number of things that can help with itching and pain, but you need to tell them you are have problems...

~chris

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"Had" shingles more times than I can remember. One notable attack presented in a strange way; few blisters and bilaterally, and hence wasn't treated. The doctor dismissed it as "not" "shingles". The infection spread into my spine and took months to resolve and brought some of the worst pain ever. That was my second bout and preceded my diagnosis of CLL by a few years. In an attempt to find a "cause" for my symptoms I saw a hematologist who "proved" the viral infection with blood tests. While there is no test for "shingles" he explained that with shingles, certain types of cells Behave in certain ways. He was quite concerned at the time over my very low T and NK cell counts. He warned that those counts were an indication that hematological cancer and probably skin cancer were likely in my future. Unfortunately, he was correct on both counts.

After diagnosis it didn't surprise me when I was told to watch out for shingles. After two more bouts, one in my mouth I was put on antivirals; stayed on thru PCR course.

My course is more complex than most, but I'd probably agree that for most CLL patients discuss keeping a prescription for antiviral medication since when shingles does appear, it seems to prefer a weekend. Since early treatment can avoid some of the more serious effects, you're prepared.

Beth

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Spooky, mine started at a weekend. Luckily i got the antiviral by 3rd day. Im not sure if its helped as my rash covers 40% of my torsso.

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Ouch. Sorry to hear it. The drug should help, at least make it a milder and or shorter course

Weekend discoveries aren't so silirprosing. Probably because it can take time to "bloom" and then even longer to get to a doctor.

Hope your case isn't too bad

Beth

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My husband who has CLL had it in February. He took valacyclovir but only for one week. As long as he was on the valacyclovir he was OK but when he stopped it he developed bad pain and itching. Lyrica was very helpful and also warm showers controlled the pain relatively well.

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Zoster loves to reactivate just prior to 3 day weekends when your doctor is out of town on a golf trip to Hawaii...

Hours matter getting on antivirals in Shingles, in my view it is a medical emergency for CLL patients... and a trip to the ER or a 24 clinic might be the best course if action...

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I've had recurring shingles for years. In a few cases it had also caused viral meningitis which landed me in the hospital. I now take an antiviral every day to keep it at bay. It is a horrible virus as all the herpes viruses are.

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I was told its very rare to get it more than twice.

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Rare in the healthy population, but in immunocompromised or AIDs patients it is less so... it really depends on your CD4+ T counts... etc

livestrong.com/article/2128...

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My cd4 is more or less none existent. Get it up to the 200 mark then it just plumets down to double figures. Im starting to think im losing the battle.

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It is, but my immune system has always had a problem with it. Flus and colds, hardly ever get them.

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I am recovering from shingles and have posted comments. Just to say it is horrible, my GP was slow to acknowledge it was shingles and only a referral to the eye clinic at my hospital, as it was affecting my left eye, was I prescribed antivirals. The antivirals did seem to stop the spread of shingles and no more blisters appeared. There are treatments to alleviate the after effects, the hospital or GP will advise. I found the hospital were very clued up on CLL and shingles I felt in safe hands. I myself elected to stay with paracetamol and I think things are now settling down. I hope your hospital referral is as helpful.

All the best

Seven6

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