Shingles Vaccine: I have now nearly reached 6... - CLL Support

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Shingles Vaccine

Marisa profile image
30 Replies

I have now nearly reached 65 years of age! My GP surgery is offering me the shingles Vaccine. Has anyone had any side effects from it. I am worried as I stopped having the flu vaccine because of painful side effects. Is it safe to have and would you advise having it?

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Marisa profile image
Marisa
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Newdawn profile image
NewdawnAdministrator

Interestingly I had a slight reaction to the flu vaccination but sailed through the Shingrix vaccine unaffected (apart from some soreness on my arm for the second one). I’d recommend it given just how awful shingles and after effects can be.

Newdawn

BigfootT profile image
BigfootT

I had a bad reaction to the 2nd shot (2 months after 1st) and my pharmacist and doctor both said it is common. One thing my doctor mentioned was building time between shots. Instead of 2 months try 4 or 5 months. My wife took his advice and spread the shots out nearly 6 months and had no issues.

AussieNeil profile image
AussieNeilPartnerAdministrator

I am living with lower leg postherpetic neuralgia over 2 years after shingles. The shingles pain was the worst pain I've ever experienced and took months to drop to a tolerable level, even with very high doses of medication. (I didn't have the shingles vaccination prior to the shingles attack because my lymphocyte counts were recovering from treatment).

I was concerned how I would react to the shingles (Shingrix) vaccinations because some members had reported bad experiences. However, I only had a mildly tender upper arm from the vaccinations. I reacted much more to my last flu booster. Even if I had the worst reported reaction from Shingrix, if it had given me some protection, it would have been worth it.

Neil

roszika profile image
roszika in reply to AussieNeil

I was scared to have the Shingrex vaccine because of the many reports of side effects. But I went ahead late August, had the Shingrex and because it was six months since my last covid vax and as I am shortly going overseas I had the eighth covid vax at the same time. For a few days I felt a bit off but having had shingles in the past I am glad we now have Shingrex ( a dead vax). But I will wait 6 months and have the booster in Feb 25 hoping that my reaction will be nil or slight.

Spark_Plug profile image
Spark_Plug

I had mine done, yes the second was worse than the first, but the pharmacist said it usually is worse for most patients. The point is if it's a tenth as bad as Neil describes, and I'm not going to CODE, I'll put up with it.

But, we are all free to make our own choices, so I did. As your doctor offered they'd be the best one to ask about reaction remediation.

Zia2 profile image
Zia2

I’m 63 and had both shots months apart 4-5 years ago. I had a sore arm but no other reaction. Even my GP wanted me to get them asap.

CLLerinOz profile image
CLLerinOzAdministrator

The scheduling of the Shingrix vaccines for the immunocompromised can be complicated.

The recommended timing for the immunocompetent is to schedule the second Shingrix vaccine 2-6 months after receiving the first. However, a shorter schedule is often recommended for the immunocompromised. Here, in Australia, a one to two month gap is recommended for those who are immunocompromised. immunisationhandbook.health...

In the US, the CDC explains it this way:

“The second dose of RZV [Shingrix] should typically be given 2–6 months after the first.

However, for patients who are or will be immunodeficient or immunosuppressed and who would benefit from completing the series in a shorter period, the second dose can be administered 1–2 months after the first.2 For example, a shorter interval between doses may facilitate avoiding vaccination during periods of more intense immunosuppression.

If the second dose of RZV is given sooner than 4 weeks after the first, a second valid dose should be repeated at least 4 weeks after the dose that was given too early.

The vaccine series does not need to be restarted if more than 6 months have elapsed since the first dose.

Timing of vaccination

When possible, patients should be vaccinated before becoming immunosuppressed. If vaccination before immunosuppression is not possible, providers should consider timing vaccination when the immune response is likely to be most robust.

Factors to consider in assessing the general level of immune competence in a patient include:

Disease severity and duration

Clinical stability

Complications and comorbidities

Any potentially immunosuppressing treatment

Vaccine providers should consider consulting with the provider most responsible for managing the patient’s immunocompromising condition or therapy, as needed.

For vaccination of patients with altered immunocompetence, various references, including ACIP’s general best practices,4 Chapter 5 of the CDC Yellow Book,5 and the Infectious Diseases Society of America’s 2013 IDSA Clinical Practice Guideline for Vaccination of the Immunocompromised Host,6 can be consulted for additional information about the degree of immune suppression associated with different medical conditions and treatments.

The risk of deferring vaccination, and thus not mitigating the increased risk for shingles and related complications in immunocompromised patients, should be weighed against a possible diminished response to RZV if given during periods of more intense immunosuppression.”

cdc.gov/shingles/hcp/vaccin...

My story is a case in point. When I started being treated with a BTK inhibitor, the only shingles vaccine that was available was a live vaccine and it was not recommended for the immunocompromised.. My specialist recommended I take low dose valacyclovir daily as a prophylactic treatment instead.

I was, however, advised to continue getting vaccines that are administered more often like my annual and six-monthly vaccines for flu and Covid.

When the non-live Shingrix vaccine became available, I still didn't get vaccinated against shingles as there was a risk that my immune system would produce a sub-optimal response at that time and my specialist was happy for me to stay on valaciclovir.

Earlier this year my trial ended and I’m back on ‘watch and wait’. Fortunately, I'd made a very good response to my treatment so, when it stopped, my specialist recommended I give my immune system a couple of months and then get my first Shingrix vaccination. In the end, I had a bit of trouble sourcing the vaccine which meant it was a little more than two months before I actually did get my first Shingrix vaccine. Then I took the ‘fast track’ option of getting my second Shingrix vaccine more than four weeks but less than two months after my first vaccine.

Where circumstances allow, a gap of at least four weeks after getting the second vaccine and starting treatment is recommended.

Had I been on an anti CD20 treatment like rituximab or obinutuzumab, I’d have waited longer after stopping my treatment before getting Shingrix. I'm not sure if there's an official recommendation regarding this but the general view is to wait at least six months after stopping an anti CD20 medication and, if possible, request an immunophenotype test to verify the presence of B-cells if contemplating Shingrix vaccination prior to 12 months after the last infusion.

I had some uncomfortable side effects after the second Shingrix vaccine, which isn't uncommon, but, apart from a sore, swollen arm, I felt fine again after about 48 hours which is much better than potentially dealing with months or years of pain after a Shingles attack.

CLLerinOz (my emphasis)

Marisa profile image
Marisa in reply to CLLerinOz

Thank you. I finished R and V treatment in July after two years and what you say has given me food for thought. I am having a telephone consultation with my haemology team soon and will ask about the length of time to have it once treatment has stopped.

rcusher profile image
rcusher

I will be 78 in 2 weeks and just had my second shringrix shot. I had no problems except as was stated above a slight soreness in my arm on the 2nd shot .I am currently on a clinical trial with Pirto, 8 months in and am doing great. Jack

RZ8983DV profile image
RZ8983DV

No problems with either Shingrix vaccine

Alshial profile image
Alshial

had very minimal side effect, if any. The least side effects i jave ever had from any vaccine.

Floxxy profile image
Floxxy

I had it last year. I had a slightly sore arm for a couple of days but was fine. X

clifflee profile image
clifflee

No problem with shingles vaccine, had it on same day with flu vaccine maybe a little sore for a couple of days. I had chicken pox in 1950s and shingles twice in 1970s.

Pretty sure you will be okay with it, best wishes

RamsesII profile image
RamsesII

I have had the two doses of the Shingrix vaccine three and a half months apart without experiencing any side effects whatsoever.

it’s can be pretty rough for a couple of days for both doses. I had a pretty strong reaction, but my subsequent antibody response was very strong when tested. I know these vaccines can invoke reactions and make you feel unwell. Remember you are not infected, what you are feeling is your immune system doing its job. Pain killers and rest, couple of days you will be fighting fit. Shingles is very painful and last a long time, so the short term pain is worth it.

Marisa profile image
Marisa in reply to MovingForward4423

Thank you. Very reassuring.

Mtk1 profile image
Mtk1

Definitely get the vaccination, having had shingles myself I jumped at the chance to get vaccinated. Believe me you don’t want shingles.

Dave.

Angie4now profile image
Angie4now

I too was concerned and afraid because I had severe side effects with the Flu shot and stopped taking it. I took the shingles vaccine 6 months apart and just slight soreness. Good luck

Having had shingles three times, I jumped at the chance of receiving the vaccine. I was only 35 when I had my first shingles outbreak. So extremely painful. I was sent to NY Skin and Cancer Clinic just to verify that’s what it was because otherwise I looked like a picture of health. Good luck. Sally

Crosstrek profile image
Crosstrek

Hi MarissaI didn't have any issues with the first shingrex vx but did have a bad reaction to the second- was bed ridden for a few days. I would definitely wait 6 months in between. But I would rather get the vaccine than get Shingles!

claree_ford profile image
claree_ford

I had mine, very little reaction to the second, nothing that a paracetamol wouldn't fix to begin with for the first. The bad reaction I did have I think was nothing to do with Shingrix but as a result of the nurse not sterilising the injection site first - day four to seven my left elbow hurt, then my arm itched, swelled, went red and became very sore. It resolved itself and I feel all that could have been avoided by wiping with surgical spirit ... I shall take my own cleanser next time!

Marisa profile image
Marisa in reply to claree_ford

Oh my goodness. Not sterilising the site first. How awful. Glad you survived. Paracetamol seems to fix a lot of things. Have been suffering with bad leg pain and remembered for the fist time to take paracetamol. Can’t believe how better I am already feeling.

Bryantx512 profile image
Bryantx512

Knocked me down for 2 days each time. Fever, chills, aches. Just generally felt like flu for 2 days.

mdsp7 profile image
mdsp7

I was fine after the first shot, a little under the weather for a day after the second. The shots were really not a problem at all compared to my apprehension!

Edalv profile image
Edalv

I had my first shot about 2 years ago. I had a little discomfort at the site of the infection, but nothing major. Then I waited 4 months for the second shot, and don’t remember having any symptoms other than a little warmth and discomfort at the injection site.

Smac29 profile image
Smac29

Hi Marisa,

I’ve had shingles twice somewhat mild but still very painful. I did get the shingles vaccination afterwards with side effects. I would definitely recommend it. It’s so worth it. Shingles is no fun!

Sheryl

Adlucy profile image
Adlucy

I had no problems with the first Shingrix but after the second one, my arm was very painful for some time. The practice nurse who administered it is brilliant and I didn't feel a thing but she warned people have had discomfort after the second dose.

PaulSkinne profile image
PaulSkinne

I have active CLL, and NH lymphoma in remission. I've had the shingles vaccine, and was very grateful when I developed a very mild case of shingles, without pain, only itching. I highly recommend getting the vaccine.

scarletnoir profile image
scarletnoir

Shingles can be very nasty in some cases by all accounts, so unless there is a good reason to fear a bad reaction it's probably better to have the vaccination - but of course, we never really know in advance, so it's got to be a personal decision.

In my case, I had two Shingrix shots a few years back with a gap of around 4 months iirc - first shot, no problem. I had an off-day after the second shot, but it was no big deal and I soon recovered.

I hope that, whatever you decide, it works out for you.

Marisa profile image
Marisa in reply to scarletnoir

thank you. I will be booking it and hope to have no side effects.

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