I havnt posted for ages mainly because I’m generally very fit and well and do vast amounts of excercise but hoping for some possible explanations.
Diagnosed 01/18 aged 71 now
I had shingles 12 yrs ago but wasn’t very ill with it
I arranged my first shingles jab for end Sept 23
No side effects but developed shingles mid Nov.Had anti virals but not very ill,though rash lasted 8/10 weeks
Has 2 nd shingles jab mid Mar and had bad side effects ie swollen hot arm
Fever,shivers and rash.the rash spayed and got worse and I now have shingles again but not ill with it ( itching driving me mad though)
I know a non live jab can’t give you the illness but could it have affected my immune system and made me susceptible.I am used to having ailments so surprised that I could have shingles twice in 3/4 months.
Any insight would be very welcome
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Coffeejenny
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Coffeejenny, my oncologist says shingles can regularly raise its ugly head. I've had 5 outbreaks in the last 18 months. I'm 75. Fortunately, other than affecting my mood 3 days prior to the rash, which is a "crazy itch" to deal with, valtrex works well. I now take a minimal dose of famiclovir(125mg) twice daily to hopefully keep the virus suppressed. The one daily valtrex(valacyclovir 500mg) messed with my thinking and caused joint pain into the 4 month of daily doses. I do switch at the time of an outbreak to the regular twice daily valtrex for 3 days, then back to famiclovir. I'm simply trying to find a good balance for me. I did not take the 2nd shingrex shot because of the bad side effects from the first. 😊 Sandra
I've had recurrent Zoster 5 times over about 40 years, two before my CLL diagnosis. The three episodes since my diagnosis are likely related to: (1) the reduced immune function, both T and B cell abnormalities associated with CLL (2) prior chemotherapy with fludarabine and cyclophosphamide causing stem cell damage and (3) current therapy with BTK inhibitors. To prevent further episodes of shingles, I've been on a valacyclovir 500 daily with no further episodes. Most troublesome for me now are numerous cutaneous warts on my hands and feet for which there are no satisfactory treatments - another manifestation of immune deficiency.
Thank you,It can’t be a coincidence and I have no co morbidities and don’t take any medication at all.info suggests it is rare but my case and others will probably never be documented.
I prodrome, which means I get pain/tingling/itching before the lesions pop out. I generally can get an antiviral on board before they do, or they only pop out minimally, and I can tell you some years I may have to take the drugs every other month. So serial infections are a possibility. My GP does the prescribing.
It sounds like Shingrix just isn't working for you.
Has your Dr suggested prophylactic antivirals? I have been taking 2 x 400 mg prescription Aciclovir for over 4 years with no noticeable side effecta and no return of the dreaded shingles.
As quoted in the section about prophylactic treatments in our pinned post on vaccinations, "A brochure for GPs produced by Oxford University Hospitals in the UK recommends "If a [CLL] patient has a history of shingles, then they should still receive lifelong Aciclovir as secondary prophylaxis in addition to the Shingrix vaccine."
It would be great if we could get a universal approach to this matter, along with some clarity about how it relates to those without a history of shingles who have CLL, especially outside the context of a clinical trial where it is more likely to be prescribed.
I quite agree. UK members' comments would suggest that many doctors are oblivious to prophylactic Aciclovir. In my case it took three episodes of shingles to finally get a prescription (my sister, a retired dentist, was astonished).
Could it be an instance of a drug that the GP assumes would be prescribed by Haematology and vice versa?
One of the problems, as I discovered recently, is that, because there’s no clinical trial evidence to give a clear answer, even haematologists can be ambivalent about prescribing shingles prophylactics, particularly to someone who’s not in treatment for their CLL.
At my last review, it was suggested I stop taking it and I spoke of the weight of anecdotal evidence on this forum from members who’ve ended up with shingles when not taking (or after stopping) a prophylactic like aciclovir or valaciclovir. I was told there’s no strong evidence one way or the other but that staying on it would be unlikely to cause me any harm so I chose to remain on valaciclovir, for now, anyway.
The other advantage is that I’ve not had a single cold sore since taking it but was cursed with regular outbreaks beforehand.
Judging from UK members' comments, admittedly only an impression, "probably" may be a bit hopeful. Is there any clinical guidance on this?
My three shingles attacks, and the associated investigations, all came late stage pre-treatment. I'm fairly certain it was the GP who wrote the prescription for daily Aciclovir. I don't believe it would have happened otherwise, not being part of the FLAIR trial protocol.
Mine was stopped the day I finished V+O even though the hospital I attend is part of the East Midland cancer alliance and should be using this Thames Valley "Oxford" protocol. I was getting 400mg twice a day. That also included an antibiotic once a day, not in protocol.
Thanks. Per protocol, stopping antivirals 3 months after completion seems premature, IMO. In your case, what were they thinking? I suppose you never had shingles?
I did get acyclovir last November but this time it would be too late as believe I’ve had it for 3/4 weeks since jab 2 Luckily I’m not ill with it and guessing I won’t get it again as will never have shingrix again
You've had your share of discomfort, that's for sure. Please do let us know if you have anything more to share after you've had a chance to talk to your CLL doctor about your experience.
Coffeejenny, just be aware that having an attack of shingles is confirmation that you have the varicella zoster virus. Most of the time it lies latent and causes no symptoms. In CLL patients the virus tends to reactivate, and cause shingles, as the disease progresses and an already compromised immune system weakens further. As with other kinds of infection, patients tend to be at their most vulnerable during treatment, though specific treatments and their stages differ in this regard.
I don't know why you reacted to the shingles vaccine in the way you did. If you really did receive Shingrix rather than the active vaccine, I guess it was some kind of exaggerated immune response. My point in para 1 is that your immune response is likely to weaken over time, so be prepared to push for prophylactic AVs when the time comes, ideally before the next attack of shingles, which could be much more severe.
I honestly believe the shingrix jabs are the only reason I am suffering for the second time in 4 months ,with this episode starting within 24 hours of my second jab and the last episode within days of the first jab .Apparently it is a known side effect of the jab
I havn’t had shingles (touch wood) nor the vaccine.
My experience with the Covid vaccine the last two times was diagnosed as - full viral response to the vaccine. I end up sick ‘as if I had Covid’ and it’s all very unpleasant. Apparently it is a positive thing as the body’s immune system is reacting. Also I have never had Covid (touch wood again)
I’m due an annual booster now but willing to give it a miss this year.
Not sure if there are some similarities in the shingles vaccine after effects you’ve had .. but the positive being you havn’t been Ill with it 👍
After reading all these comments about dealing with shingles, I see now why -- at my absolute first visit with my oncolonogist -- his only recommendation about anything was that I get the new shingles vaccine. By the way, I've mentioned my daily intake of monolauren before, which is a special form of cocoanut oil that messes with the lipid envelope of enveloped viruses, and just checked and shingles is enveloped.. Google it. Good for you even if you don't believe in its effectiveness re viruses.
I like SofiaDeo had itching area for several years before shingles outbreak in same area, did not think much of it at the time. I had classic shingles from left shoulder blade around to center of chest. I was prescribed gabapentin for nerve pain. Third day started 20 minutes warm baths in tub with 1 cup of Epsom Salts and 1 cup of baking soda. Shingles red eruptions shrank from 3/8 dia to 1/8 dia within 1/2 hour after first bath. Shingles eruptions dried up in 1-1/2 weeks and nerve pain gone in 1 month. CLL doctor told me not to have shingles shot for at least 3 months after clearing shingles. GP said not to bother with shingles shots. One year later have not had another shingles outbreak. Do not have pre-itching area either. Blessings.
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