Shingles vaccine reactions

[Williamhenry]

I was told that all Cll patients would get shingles. I am 63 now and have taken s shingles vaccine on the advice of my Dr. Has anyone been told to do the same thing and if so was there any reaction to the vaccine? For example, shingles, blisters, or anything that would be uncommon with what you normally would expect.

[Justasheet1]

W,

There are 2 shingles vaccines. One is live. DO NOT GET ANY LIVE vaccines.

The Shingrix vaccine is not live. A sore arm and perhaps feeling crappy is all.

Jeff

[WayneOutWest in reply to Justasheet1]

Hi. I'm new to the forum, diagnosed in 2010 with type 0. Last week had my second Shingrix shot. It was red in the injection site for about the days and the settling is still evident. The weird part was having a lymphomic reaction. Today, there was enlarged nodes under my left armour and on my left clavicle. The Dr said it's a reaction to the Shingrix

[Justasheet1 in reply to WayneOutWest]

Maybe you just had a strong reaction. It’s better than not having any reaction. Sounds like due to being early on in the disease, your immune system is pretty strong.

Jeff

[WayneOutWest in reply to Justasheet1]

Thanks. Any idea how long the reaction could be expected to last?

[Justasheet1 in reply to WayneOutWest]

I figured you were past it by now. If you don’t feel like you’re turning the corner, you better call the Doc.

[AussieNeil Partner Administrator in reply to WayneOutWest]

You shouldn't consider it weird. Nodes are where our T and B lymphocytes work together to form B-lymphocytes that are specific to the infection or vaccination. That's why we get swollen nodes in our neck with respiratory infections - it's an expected immune response. Sounds like you'll have plenty of antibodies to keep shingles at bay.

Neil

[DMary]

I asked my CLL doc about it and he said there still wasn't enough info on Shingrix in CLL patients for him. That was a while ago so I'm asking again next week. I know several folks here have had it and I haven't read of any terrible reactions. I have read of terrible effects from shingles though, and since I had chicken pox as a child I worry about it.

[lankisterguy Volunteer]

Hi Williamhenry,

As Justasheet says there are two different Shingles vaccines. Shingrix and Zostavax. see:

webmd.com/skin-problems-and...

Zostavax has been around since 2006 and is a live virus given as a single shot. CLL patients should not get this, but if you had it and did not have serious side effects, you are fine.

Shingrix was approved in October 2017 and is given as two injections several months apart. It is far more effective for older people and for some immune compromised folks. It has not been tested in CLL patients, but has been tested in bone marrow transplant patients.

I had both injections and got a sore arm from the second shot, for about one day- that tells me that my immune system did react to the vaccine- I consider that good.

My CLL expert doctor recently asked if I wanted to discontinue taking one 400 mg Acyclovir tablet daily. Since the Shingrix is thought to be 60% to 80% effective in preventing shingles, he advised that continuing Acyclovir was likely near 100% effective in preventing shingles.

Len

[HopeME in reply to lankisterguy]

Hi Len

I’m on Acyclovir and was also told it is extremely effective preventing shingles. How long have you been on Acyclovir? My doctor mentioned that I’d have to come off it at some point. I neglected to ask when that might be. It’s on my question list for October. I’ve been on Acyclovir for about 7-months now.

Thanks

Mark

[lankisterguy Volunteer in reply to HopeME]

I have been on Acyclovir since 2013. I was on valGANciclovir (Valcyte®) for 6 months in 2012 trying to treat a resistant strain of HHV-6 (Roseola) and later vALAcyclovir (Valtrex) for shingles prophylaxis but that gave me severe gastro problems. So I have been on the oldest Acyclovir ( Zovirax ) for over 6 years.

Len

[HopeME in reply to lankisterguy]

Thank you Len. That information is good to know. I have similar markers to you.

Mark

[EugeneL2]

I have received both shots of Shangrix at about 3 months apart. The 2nd injection resulted in a fever over 103 during the first 24 hrs and low-grade fever the next two days. I looked online at CDC website and realized this is to be expected.

[Justasheet1 in reply to EugeneL2]

Eugene,

How did you do on the first shot?

Jeff

[EugeneL2 in reply to Justasheet1]

The first two days after my first shot I felt pain and swollen at the injection site, which is quite common with other vaccines I had before. I only had a very brief severe reaction about 12 hrs after the vaccine. I experienced about 30 seconds dizziness while lying on the bed.

[Justasheet1 in reply to EugeneL2]

I had soreness for 5 days and woke in a sweat the first night. Never had a fever though. The shot is on a national back order. I should get the next one soon but your fever has me a little concerned.

[EugeneL2 in reply to Justasheet1]

I still think Shangrix is a great vaccine. I can not recall when I had my last fever before the 2nd shot. At least two or three years ago. I believe the 1st shot did the job and generated a lot of antibodies. The strong response I got after the 2nd shot indicated that the Shangrix vaccine worked in my body and mounted a stronger response to the antigen. I am with you. Each person and his or her flavor of CLL is different. There is no data from any systematic study of Shangrix use in CLL yet. It is difficult to make a decision.

[avzuclav in reply to EugeneL2]

My experience with Shingrix was very similar to EugeneL2's. Fever and one night sweat about 24 hours after the 2nd dose, plus a newly enlarged lymph node on the left side of my chest (same side as shot). 1st dose slight pain and swelling at injection site.

[Justasheet1 in reply to avzuclav]

How long has it been since the injection? And how long between shots?

[avzuclav in reply to Justasheet1]

four weeks since the 2nd injection. 1st injection was four months ago.

[MsLockYourPosts Passed Volunteer]

I have never heard of a CLL doctor saying that all CLL patients WILL get shingles, though I believe we are more at risk than the general population. My hematologist is for getting the shingrex vaccine, but there is none available around here, so I guess I get the best of both opinions, as specialists seem divided about whether to sit or not.

[aloneagain]

Interesting. I jad Shingles about 5 yrs ago but due to being on opioids, no pain and all I did was scratch myself sillier! Boy, was I lucky.

[sweetsue49]

I took the first new shingles shot in Sept and my arm was very sore for about two weeks and I felt a little out of sorts. But I had planned for this in my schedule so I just didn’t push myself for a couple of weeks and I actually feel better now, a couple months out, better than before shot. I need to take the second shot now.