Hi
I am glad to report that I needed no hospital admissions in 2023 (having had 4 in 2022)
Decided after open ended discussion with my GP not to take Covid or Flu vaccinations as each one had in the past laid me up with fever etc for a week to ten days and feeling dreadful.
Next up is an offer of an appt for a Shingles vaccine on 11th January.
Any views on whether to accept or not would be much appreciated
Ivan Hihoho
The implications of contracting shingles can be so severe for us CLL’ers that I’d probably recommend having the Shingrix vaccine.
I had my 1st shingrix vax two months ago and it caused me no issues whatsoever. I was due to have my 2nd this morning but have had to cancel as I have a bad cold at the moment and don’t want to overload my already impaired immune system.
Interestingly, the flu vaccination did have an effect on me (taken a few weeks after the shingrix). I developed an episode of tachycardia which took some hours to resolve. I’ve previously been hospitalised with this.
If your doctor is recommending the shingrix vaccination, I’d go for it.
Best wishes,
Newdawn
My last winter COVID and flu vaccination had my temperature over 38°C for the next two days when I was asleep. Can't say what it was for sure as my smart watch is a liar and says it was 42°C. Woke up on the sofa at 11pm and took temperature using a digital thermometer, 39.3°C, half hour later it was 37°C so I went to bed, too cook some more. The spring COVID vaccination did the same. Felt utterly washed out for the two days after. The previous COVID vaccinations had no effect, this has only happened since I've been on V+O.
I've no idea about Shingles vaccine as I'm on treatment and it will be the end of August before I can think about that.
I agree with you. I am not getting shingles shot. My docs don't really encourage it especially after I tell them I am very concerned about side effects. My CLL expert said few years ago it was not that effective & no I don't have anything in writing about the study. But it's a chance I have taken. I have had flu shots since college 50 years ago & never had issues. Do what u feel is right for you. You can always change ur mind.
I am waiting to get an appointment to have the Shingrix vaccination. My GP surgery is apparently putting together a list of those eligible (that is what I was told 2 months ago when I phoned for an appointment). Not impressed and still waiting!
I have been advised by my consultant to have the vaccine. Following FCR treatment in 2017, I was on Aciclovir tablets for 4 years. I decided to stop taking them, then, a year later, developed shingles. It was the most horrible condition I think I have ever had with a painful rash around my waist that got so much worse at night when it got warm in bed! When I also learnt that shingles can come back again and, even worse, you can have it on your head and eyes, I definitely decided I wanted to have the vaccine - if my GP surgery ever get their act together that is!
Thanks but rather harsh Jammin. Ivan (and if that’s your actual name, I’d advise locking your post), is asking advice on the Shingles (Shingrix) vaccine having suffered extreme reactions to other vaccinations resulting in hospitalisation. I have a sense he regrets not being able to simply have vaccinations without fear of disproportionate adverse reactions.
Admin Edit; Thanks for editing your comments in line with these observations. I’ve responded accordingly.
Newdawn
Thank you Newdawn for understanding and articulating what was in my mind.
For the record I am a believer in prevention rather than cure and therefore a supporter of vaccination.
Jammin's interpretaion has left me disappointed and somewhat bamboozled.
I appreciate your quandary, but having had several admissions to hospital for febrile neutropenia, where I've had a fever for between the best part of a week to a month or so, and felt dreadful while waiting for IV antibiotics to take effect, then developing shingles 18 months ago and subsequently postherpetic neuralgia, which I'm still still suffering daily, I'd willing risk even several months of a bad reaction from a Shingrix vaccination. Shingles and PHN has been the worst health experience in my life. I pretty well needed to learn to walk again after shingles attacked my sciatic nerve, giving me blisters from my groin right down to my foot and extreme pain throughout my entire right leg.
Coincidentally, yesterday I asked my GP if I could have the Shingrix vaccination (there's a recommended wait for a year after having Shingles and it became free for Australians who meet specific criteria last November). I was offered it as soon as the practice nurse was free - about 10 minutes later. So I now have a sore arm and am feeling decidedly worse than after flu, COVID-19 and pneumonia vaccinations, but I'm still able to go about my daily activities. Hopefully my reaction will be the same after my second shot in 2 months, but if not, I'll still willingly put up with feeling ill for a few weeks in exchange for any edge Shingrix will give me against another bought of Shingles. As it is, I will be on antivirals for the rest of my life, though I hope to eventually wean myself off pregabalin, which is making my PHN tolerable. I've never had a medication with such challenging side effects as pregabalin, but I was extremely relieved when I finally found it gave me relief from the unrelenting pain of Shingles/PHN.
My Shingles infection was a case of bad timing and a bad decision on my part to opt to stop taking the antiviral, because I mistakenly thought it was causing side effects which were in retrospect most likely due to the lingering effects of my trial treatment drugs. Shingrix wasn't initially available in Australia - there were world wide delays when supply couldn't keep up with demand. When it finally became available, I didn't have much in the way of healthy B cells available to respond to the vaccination.
Neil
About 3 or 4 months after my second shingrix vaccination (back in the days when I still had normal IgG levels and was on watch+wait) I came down with a case of shingles without a rash involving one side of my head/ear area. It was confusing and a third doctor I went to suggested trying Valtrex. The pain stopped after 3 days, and came back a week after I stopped the 7-day course. I have been on twice-daily Valtrex 500mg ever since without any more flares. A new physician asked if I wanted to stop the Valtrex after completing V+O, but I really do not want to experiment again without the daily Valtrex.
I'm increasingly becoming convinced that the excruciating pain I developed at the back of my head soon after starting treatment was rashless Shingles. It's rare but does occur.
My one-sided head and ear pain for the 3 months included a continuous soreness to my occicput. It was amazing how it ceased after a few days of 1000 mg every eight hours of Valtrex. There were no visible lesions, and after seeing several physicians, it was finally a CLL specialist who recommended trying a week of Valtrex which did help.
If it's helpful Neil, I have finally weaned myself off Pregabalin (was by this stage only taking 100mg at night). I didn't like the side-effects either, though they were a lot better than the neuralgia!
In fact it gave me up really, as I have just had my first bout of Covid and I couldn't stomach anything. Once I'd not had Pregabalin for 3 nights I decided it must be time to stop. Sleep is badly disrupted now though ......
Best wishes, stay strong and thanks for your ever-helpful input.
Linda 🙂
I agree that the shingrix vaccine (with its documented success rate) is absolutely essential for CLL’ers who can have and tolerate it. My perception is that Ivan does want this vaccine but is merely seeking advice in advance given his vaccination history. Hard to know how any of us may react to any vaccination but given the severity of shingles symptoms, I’d take the risk! I hadn’t a single reaction to the first shingrix jab incidentally.
Newdawn
I received my Shingrix vaccination early on in my CLL path. I had a reaction but it was mild. I was keen to get it after watching my elderly father suffer from it. I had not realized until I was taking care of him that it doesn’t just itch - it causes nerve pain. He was pretty miserable with it and I want to avoid that. I have had enough pain my life already IMO.
So if it’s possible to get this vaccination, I would recommend it.
Hi. I had a reaction to the first dose just a rash didn't feel ill. The second one gave me no problems at all. I would recommend having the vaccine.
I had a bout of shingles a couple of years ago, most unpleasant, and decided to have the Shingrix vaccine when it became available last year. I did have a reaction to both doses (flu symptoms, headaches) which laid me up in bed for three or four days each time. I discussed it with my doctor and he advised that these were possible side effects of the vaccine. Perhaps you could discuss the vaccine with your CLL specialist before making a decision? In my case I did not want a repeat of shingles if there was a chance of avoiding it but it is very much a personal decision. Good luck 🤞
I had first Shingrix early Dec (along with a pneumococcal vaccine). Only a mild soreness in arm. I took it because it was recommended by my CLL nurse practioner.
I agree with Newdawn (and others) - when I got shingles, I was very luck as it was caught early and I took double doses of pills at start to boost my immune response - I got off lightly. I don't want to risk something severe, as it would be very nasty
Shingles is way worse (in my opinion) than a few days feeling unwell after a vaccination, I personally couldn’t wait to receive my shingrix vaccination after suffering from this condition and didn’t suffer bad side effects,, so my advice would be to get vaccinated.
I go for my first shingrix vac. tomorrow.
In 2015 I had a bad bout of shingles mainly on my right foot ... I now suffer from Post-herpetic neuralgia in the foot which has stolen any meaningful mobility.
The foot itself is like a piece of dead meat until I put on a shoe and/or stand on it, it can be very painful. It has so changed my life that I would encouraged everyone to get vaccinated against shingles.
ygtgo
To add another voice I had no reaction to either Shingirix jab, beyond a sore arm. But the COVID jabs (three different suppliers) have laid me out for 48 hours each time! Hope it all goes well, whatever you decide
Hmm. After reading that you had such a bad reaction to both the flu and the Covid vaccines, I understand your hesitancy with the Shingrix vaccine. It certainly provoked a stronger reaction in me than did the other two vaccines.
On the other hand, the risk of shingles does increase with age and CLL stage. Having had shingles twice, I recommend avoiding it every which way. What has worked for me for 4+ years is the oral antiviral Aciclovir, 800 mg/ day, which I'm sure your GP would be happy to prescribe as an alternative to Shingrix. I recommend Aciclovir even if you can bring yourself to have the vaccine.
Having had shingles myself 3 times I've been on Acyclovir for 5 years or so and was grateful to have the Shingrix vaccinations, despite side-effects, as shingles and associated PHN were far worse than antivirals and Shingrix itself. Hope this is helpful.
Linda 🙂
Hello.
My husband (the one with CLL) has been offered the shingles vaccine on Saturday this week.
I hope he doesn’t get much in the way of side effects, but he had shingles a few years ago and I can tell you he was in a lot of pain… and found it difficult even to sit down 😣
His consultant says that it’s a good idea to have it, so fingers crossed it will work well.
I hope it goes well for you too!
Fran 😉
I am very grateful for the positive and compassionate responses from nearly everyone in this supportive community.
Based on your comments and my GP and CLL Consultant I feel assured that the right course of action will be to have the Shingrix vaccine but not the other one on Thursday.
I feel quite humbled by the sharing you gave me of your experiences and fears.
It’s so good to know that you are all there and happy to offer your thoughts and advice.
I will let you know how it goes!
Warmest regards
Hihohiho
I think I am one of the few unlucky ones that had a bad reaction to shingrix, ended up in hospital on antibiotics, advised not to have the second one.
That's very unfortunate for you and very unusual. Antibiotics indicates a bacterial infection, which implies contamination through manufacture or more likely poor administration. Was your skin wiped prior to your injection or do you know whether you had neutropenia?
I'd be very interested in why they thought you got a bacterial infection from what should be a single vial use vaccine, or the reasoning behind you not having the booster.
Neil
I would strongly recommend the vaccine. I had shingles over 2 years ago and still suffer constant pain. It has really made life difficult and more of a concern than the Cll. I am on 25 tablets a day plus patches. I had my 2nd jab on Monday and still feel a bit rough but well worth it if you can avoid shingles.
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