Shingrix Vaccine - Experience of Others...? - CLL Support

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Shingrix Vaccine - Experience of Others...?

I am considering having the Shingrix vaccine (first in series of two), and I'm wondering if anyone has suggestions on what to do to help with the apparently unpleasant side effects. I can't take NSAIDs due to Dr. orders. But, would like to hear of others' experience with this shot and have an idea what to expect - how long do side effects last, anything that helps alleviate, etc. Thank you!!

25 Replies

Everyone may react differently, so I think you might get different answers. I had my first Shingrix shot in November. Other than mild soreness at the injection site that lasted a few days, I had no side effects I could tell.

I had the my first Shingrix shot and Prevnar 13 shot at the same time a few weeks ago and had no side effects.

Hope it is nothing more than soreness when I get it Monday. I have a ski trip that Friday.

My cll specialist, Dr. John Byrd, at this time does not recommend it. He claims there is insufficient efficacy in cll patients and that there is a new vaccine in the works. Obviously, other cll specialists have differing opinions.

lexie profile image
lexie in reply to cmh55

Yes, same answer I got from Dr. Byrd.

When I had my first of the Shingrex vaccine shots, I had quite bad flu like effects for over three days, with a bad headache, nausea, and general malaise. The pain from the injection site was enough to keep me sleeping on that side for several days as well. I hope that the second dose that I plan on taking at the end of January does not have such a reaction.

Some people do get reactions that are several days in length and some people don't get anything other than discomfort at the injection site.

The shingrex vaccine has been tested in AIDS patients and found to give them good results at the one year mark after the second dose. Also, some CLL specialists do recommend that their patients receive the vaccine.

I would suggest you follow your doctors opinion on having the vaccine.

Sandy Beaches ( west coast Canada )

My symptoms matched yours. For shot 2, didn’t hurt as much but I had the malaise etc. again. According to my doctor, it’s worth it as shingles is so painful and, if not caught in a timely manner, one can have permanent nerve damage.

lexie profile image
lexie in reply to ChasingJen

I got into the ER within hours of the Shingles virus appearing and still got lasting nerve damage despite taking antivirals. Mine is numbness and 12 years later finally seems to be receding somewhat. It covered the entire left side of my trunk, front and back.

My husband had the Shingrix shot. His arm was mildly sore for months and that arm lost some strength!

The first shot was nearly un-noticable, however, the second shot produced flu like symptoms for nearly two days. I prefer the vaccine side effects over shingles.

elm1 profile image
elm1 in reply to Smakwater

I had similar symptoms. No reaction from the first shot but I was down for the count for a day after the second shot. Better than getting the shingles I’m sure.

I had only a slightly sore arm for a couple days. No other side effects.

I had my first dose in August before I started Ibrutinib. I was surprised with the effect it had, as I was healthy and not affected by immunizations. I developed a fever and felt flu like symptoms for several days and then was fine . I heard those were expected side effects. Worth it though. I get my second next month. Wonder how it will be different now that I’m on Ibrutinib.

As already said, people react differently.

My wife without cll and I with cll each had nearly identical responces with two days of fatigue, low grade temp and sore arm. Although not necessary, tylenol helped.

Two days of these symptoms on both shots six minths apart. Then total recovery with no lasting side effects. Our separate doctors said the reaction is typical and suggests a good responce.

Get it if you can. Much better protection than live vaccine you may have had in the past and longer duration of protection.

Capt Ron

Thanks to all who replied and shared their experiences!

I haven’t had the new Shingrix, and will check with my CLL specialist when I see him if he recommends it. However, in the meantime, my GP advised that if I were to develop shingles symptoms, that I still have three days to get the vaccine and it would be effective in curtailing it. After three days, it is apparently too late.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Wordmonger

I think you are confusing the Shingrix vaccine with antivirals like Vaktrex, ... to combat Zoster, reactivation.

In CLL the faster you get on antivirals after shingles virus reactivation, the better the outcome... 12 hours is just about the longest you should be without treatment. In my view Shingles and CLL is an emergency situation, particularly if the face is involved..

Many patients on treatment for CLL, are put on low dose antivirals, to prevent or stop the shingles, some stay on it for a year or longer...

~chris 🇨🇦

Wordmonger profile image
Wordmonger in reply to Cllcanada

Thanks for the information, Chris. My GP is probably unfamiliar with shingles and its implications for persons with CLL. Are we more susceptible to shingles, and are your CLL specialists recommending Shingrix for all people with CLL, regardless of stage? I’ve never had shingles, but it doesn’t sound pretty!

I have CLL and had a sore arm after my first Shingrix. My wife, who does not have CLL, was sick for several days. Both of us will be going in soon for Shingrix #2.

I had my first shingrix shot in July before started treatment with Ibrutinib. Had a pretty sore and hot arm for a couple of days but felt ok. Stated Ibrutinib in August and had my second shot about 10 days ago and was surprised to have no adverse reaction at all - not even a sore arm this time



UPDATE: Well, found out there is indeed a shortage of Shingrix vaccine! I found a website called Shingrix vaccine locator and started going down the list of pharmacies in/closest to my zip code. After about 15 calls, I found one that actually had it in stock! (This was after getting added to several waiting lists.) Got the vaccine a couple of days ago. Biggest complaint so far is that my arm is very red at/below the injection site and it hurts pretty bad. That shoulder was already having problems after an accident this summer so opted to use the same side since it already hurt! Hope it gets better soon, but at least no flu-like symptoms (other than I'm moving a bit slower than usual).

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to

Sounds fairly typical reaction in CLL patients, remember you need a second injection in 8 weeks or so...

~chris 🇨🇦

Lola69 profile image
Lola69 in reply to Cllcanada

But is it effective in the immunocomprimes ? What those that have had shingles is that not like being vaccinated?

I think shingles is the worse affliction.

I've heard varied stories about reactions, and they are not limited to those of us with CLL. My 54 year old healthy son had a slightly sore arm after his first Shingrix injection, and was bedridden for two days with flu-like symptoms after the second injection. I've heard some say that having a reaction is a good sign that the vaccine is doing its thing. As for me, and others on Medicare who have to get the injections at a pharmacy in order to have insurance coverage, supplies are still relatively unavailable.

I was curious to see if others had a reaction to the Shingrix. I had no reaction at all to the first shot (I have SLL, dx in Aug 2018). I had the second shot 2 most later and seemed fine at first but about 4 days later I had a huge lymph reaction on the side of the shot. In particular, a node above my collar bone swelled up so much it looked like I had cut a soft ball in half and stuck it under the skin. The armpit and neck nodes also swelled. They were a little tender and went back to "normal" (enlarged but not so big) a few days later. I wonder if I had waited an extra month or two if it would have made a difference.

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