Shingles vaccine side effects?

[t2aa]

I had the first of 2 shots for shingles on Wednesday. Shringrex I believe. I asked what the side effects would be and all she said is “you’ll feel like crap for about 3 days and your arm is going to hurt”. Boy was she right! The 1st day, I could barely get out of bed and then called it a night at 5:00! And my arm hurt so bad even slightly brushing against it made me jump in pain!

The next day I felt better, but arm hurt really bad for 2 more days.

Now, 5 days later, arm is much better but I woke up with blisters in my nose and red spots on my very sore, swollen throat, and lesions on my toungue . What new hell is this? Side effects?

[Jemorgen]

Yikes! I don’t know about those blisters but I reacted to my 2nd shingrix (nothing with the first). My lymph nodes on the side I had the shot swelled significantly for a few days and were tender. Not too flu-y.

Heather 🇨🇦

[t2aa in reply to Jemorgen]

I’m trying to decide if these are side effects and will be gone tomorrow or if I need to go to prompt care.

[Jemorgen in reply to t2aa]

Do you have a fever?

[t2aa in reply to Jemorgen]

No

[Jemorgen in reply to t2aa]

Others may chime in but if no fever and the blisters are minimal I’d wait. The pharmacist may be able to respond if you call. Some cancer clinics/specialists have nurse practitioners or the like who could answer your questions.

[t2aa in reply to t2aa]

I am just now reading the Shingrex website and under less common side effects are”swelling of the throat and hives.” Lucky me!

[Jemorgen in reply to t2aa]

💕

[t2aa in reply to Jemorgen]

Still better then a case of actual shingles!

[Jemorgen in reply to t2aa]

Way to be positive!!! 😉😜😃

[cllady01 Former Volunteer in reply to t2aa]

Any reaction that shows a blister, would send me to ask of the Dr. because I don't think of rash as blisters, but I do think of Shingles as blisters. And, that is not something to wait for esp. with an immune system disease.

[country76]

I had the first injection the day before I started IB and acyclovir to prevent shingles, just a few itchy bumps next to the sight and am having the next injection in May. I was told the next injection activates it.

[country76]

Ps hope you informed your doctor.

[t2aa in reply to country76]

Not yet. I see her next week

[Marie-54 in reply to t2aa]

Take pictures as the visible effects may be gone by then. It is unusual to have that strong a reaction on dose one. Dose 2 is usually the one with the bigger immune response. Ask if you will need to be monitored for dose 2

[t2aa in reply to Marie-54]

Good idea thanks

[Panz]

Were do you live? We are in FL in the US and have been trying since last July 30 when we had the first shot....one month later I was lucky to get the second but not my husband...he is still on a list for people needing second shots. We both had an extreme reaction on the first shot lasting almost a week. On the second shot I didn’t have any reaction. Since I have had the Shingles that lasted 3 years I was determined to get the shots.

Due to having to have IVIG every 4 weeks I am now wondering if I should repeat the series in 5 years like I do with both of the pneumonia vaccines....no one can answer that for me at this time. 🙏☘️😍💕

[t2aa in reply to Panz]

I am in the Puget Sound area near Seattle. I was on the bottom of a 287 person waiting list. But my husband went in and talked to the pharmacist and told her I had leukemia and they put me at the top of the list and I got the shot the next day.

[Marie-54 in reply to t2aa]

I went to a pharmacy in a newer, younger aged demographic and found the vaccine in stock. In the areas where we older folks lived, it was on a big waitlist. Phone around, you may find it and can get the prescription transferred.

[Panz in reply to t2aa]

Thanks!

[opal11uk]

Thank you for sharing this information.

[Notmuchenergy]

Is this shingles shot a live vaccine? All I know is I've been told never to have any live vaccines. I'm in UK and been told must not have the shingles vaccine here as its live

[AussieNeil Partner Administrator in reply to Notmuchenergy]

Shingrix is a new and in short supply non-live vaccine that is considerably more effective than the old live (attenuated) vaccine. We are still awaiting confirmation that it is a safe vaccination for CLLers, though quite a few are taking the risk. Given the excruciating pain and risk of long term complications, that's very understandable.

It's good that you know about avoiding live vaccinations.

Neil

[Notmuchenergy in reply to AussieNeil]

Thanks for the info. As the risk of shingles is quite low I'm going to avoid the vaccine

[Justasheet1 in reply to Notmuchenergy]

Who told you that the risk is quite low? You are immunocomprimised from CLL. Shingles is horrible. I’m not making any medical advice here but I got both NON LIVE SHINGRIX VACCINES and other than feeling sick for a day or two and having a sore arm, I’m fine. Travel your CLL road wisely with your specialists advice.

Jeff

[AussieNeil Partner Administrator in reply to Notmuchenergy]

I agree with Jeff. You need to multiply risk by consequences. Risk isn't that low and consequences can be horrendous, making vaccination very attractive.

[Hidden in reply to AussieNeil]

It's safe. It is not a live vaccine and originally developed for people who have compromised immune systems but now the most common shingles vaccine. I was in the military for 20 years and had shots most people would never get because of locations I was deployed at. I figure what is one more to add to the cocktail. I'm going to get it after treatment is completed.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Shingrix is not approved yet for immunocompromised patients, we are still waiting on the HIV data , for an ACIP recommendation to the CDC.

Clinical trials with Shingrix and Imbruvica (ibrutinib) in CLL have just gotten underway... results are expected in 2021.

Its very patient specific at the moment , some patients get the 'OK' others are told to wait...

The risk of shingles is greatest during treatment and after for some time... until the CD4+ T cell counts recover...

~chris 🇨🇦

[Hidden in reply to Cllcanada]

You left out this statement from the CDC> You may give Shingrix to someone who is taking low dose immunosuppressant medication, anticipating immunosuppression or has recovered from immunocompromising illness. I would think pre chemo and post chemo once blood levels are normal is fine.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Thats what I said..patient specific...

My sister is stage 0/1 CLL and I'm stage 4/5, we have the same CLL specialist. He advised my sister to get the Shingrix vaccine, but told me to wait for the finer details yet to emerge.

So, ultimately its your doctor's decision... at this point with thin data...

~chris 🇨🇦

[patagozon]

When I received my first shot, the pharmacy reserved a second shot for me so it would be available when I came back in two months. Seems to be the sensible thing to do.

[Billhere]

Lots of Shigles Stories, that’s for sure.

t2aa-abbe a quick stop at your general practitioner can clear up a lot of questions about your symptoms. maybe you are one of the “lucky” ones to get the worse reactions.

I did get the Shingrex. As others have pointed out it’s NOT live. My CLL experts and my GP and my Immunologist all agreed it was advisable to get it. I did.

Not much other than a sore arm. The pharmacy I went to made me pay for the second dose which is stored for me. I had a case of shingles the year after diagnosis in 2016 and lots of post herpetic neuropathy (random pain) presumably from the shingles.

If the claims by the manufacturer are true, I’m all for it. Abatement of pain and prevention. Much higher effectiveness rate.

I wish I had gotten it sooner - even the earlier inferior version.

[Hidden]

Everyone really is different... I had the first shot of two in mid-January. Very sore and painful arm for about 3 days. Nothing else to report. Will have the second in a couple of weeks - hope it isn't different from the first experience. Good luck - hope you are better soon!

[t2aa]

Follow-up: Throat swelling is down, redness is improving, blisters/rash are gone and arm feels like normal. All side effects seem to be subsiding. So, still way better than a case of the shingles! And from my reading - if you have CLL - eventually you will get shingles so it is definitely worth it!

[Horse714]

Received my shingles vaccine first injection 2 days ago my arm hurts and I have swelling with bumps around it, I had taken Ocrevus in April my doctor said wait 2 months after Ocrevus infusions I had my first 2 split doses one on April 1st and then April 14. My 2 month wait was quite 2 months but the neurologist nurse said it was fine just a little short for 2 month waiting period. I did it because my health insurance restarts July 1st and I had met my deductible and the shingrix was free. It’s over $200.00 a shot!!!