Shringrix vaccine: My oncologist and internist... - CLL Support

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Shringrix vaccine

PSP52 profile image
15 Replies

My oncologist and internist have reminded me with each visit to get the needed immunizations. I have had one pneumonia vaccine and will soon be getting another. I did have the zostrovax before being diagnosed. Those of us with CLL can't have that because it is a live virus. After following our dear Theresa/Lola and her complications and this week hearing that my cousin has shingles and someone who works with my daughter telling her that her father was in the hospital with complications in his lungs caused by shingles I realized that I must get the Shringrix vaccine. My husband and I both got it 4 days ago. That was the first shot. We both had side effects.....achy joints,headaches and I developed a fever of 101. Most of the side effects are gone now. Just a sore arm. The CDC posted all the possible side effects. I am glad that we had the vaccine and will be more cognizant of having the other immunizations.

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PSP52
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15 Replies
MFThorses profile image
MFThorses

I'm not one for vaccinations but reading about side effects of shingles on this forum and 3 people in my family coming down with it I got my first shringrix a few weeks ago. I had no side effects at all not even a red mark. Never had a flu shot or pneumonia shot yet.

Jemorgen profile image
Jemorgen in reply to MFThorses

Glad to hear you managed ok with the first shingrix shot. Just a heads up that it’s not uncommon to have a reaction to the second. I got a little fluish and my nodes on the injection side swelled but only for a few days. Fingers crossed for you both.

PSP52 profile image
PSP52 in reply to Jemorgen

Thanks. My nodes swelled too and that made me nervous. But I will definitely get the second shot.

Newcastle1962 profile image
Newcastle1962

Hi where did you get the vaccine as ive tried to get it at my GPs but no success. Im in uk.

PSP52 profile image
PSP52 in reply to Newcastle1962

I’m in the U.S. in Maryland and got it at our Giant grocery store.

MFThorses profile image
MFThorses in reply to Newcastle1962

In the USA your doctor doesn't stock it because they don't make enough money on it [ so I've been told ]. The pharmacy I use Walgreens puts an order in everyday and never knows when it will come in. When it does come in they get just ten doses. I have been calling but hit it right one day and they had 1 dose I ran down and got it. My brother in another state has been trying for 3 months now. I guess the pharmacy gets incentives from the drug company the pharmacist told me. I'm just repeating what he told me. Angie

PSP52 profile image
PSP52 in reply to MFThorses

Yes. I agree with what you’re saying. I am on the waiting list at both Rite Aid and Walgreens. I think the grocery store chains are not in that mix with the pharmaceutical companies.

virdieblue profile image
virdieblue in reply to MFThorses

I've been on a wait list at my local pharmacy since January. Nothing! But I will be part of a study at my Cancer Center next month. A rather elaborate way to get a shot!

webaeb profile image
webaeb in reply to virdieblue

Funny you should mention that. My husband just received his 2nd Shingrex vaccination and received it only because the health team of his at NIH (National Institute of Health) asked him at his Jan 2019 appt if he would like to be part of a clinical trial for CLL patients receiving Shingrex. (Also, the Menningiococcal vaccine was another trial offered but he had his when in the military). Many patients develop shingles due to lowered immune system & I suggested he get it (via a clinical trial) since it didn’t look like our military pharmacy was going to get any shipments anytime soon. We had been waiting since early 2018. His only reaction from the vaccine was redness that lasted for 3-4 days & which was more intense after the 2nd dose. No fever or other issues. Some people will have a much greater response to the vaccine. My husband is still in W & W mode but since I’ve had a case of shingles at 50 yrs old, I wanted him to be covered & not go through what I did & others that I know of.

virdieblue profile image
virdieblue in reply to webaeb

I'm relieved to know your husband had little bad reactions. Knock on wood - I've never had shingles, but have many friends who have suffered

Quarry profile image
Quarry in reply to Newcastle1962

In UK, I don't think generally available under NHS at the moment (might be one hospital does it if you go private, so would require travel). However, I am told it will be available in the not-too-distant future. So let's all keep a look out!

wmay13241 profile image
wmay13241

Please share the website that has the Phase 3 trial results of Shingrex for immunocompromised people.

Teddo profile image
Teddo

Am in the NIH study for shingrex in CLL pts.. Had my first injection 6 wks ago. 101 temp for 2 days and a very sore arm for 3 days. Small price for its protection. At the time of my shot was told by the doc running the study that none of the 55 pts to date receiving the injection had serious side effects or complications.

country76 profile image
country76

I am having the second dose this week. The first injection didn't bother me. Just a few itchy bumps.

caven profile image
caven

Wherever you're located, there is limited to no availability of the Shingrix vaccine via the physician's office because it requires a specially trained pharmacist to 'mix' the components prior to administration. In general, the bigger the pharmacy 'chain' the greater your chance of tracking down a dose. Pharmacists understand about the need for CLL-ers to get Shingrix so will likely earmark an early incoming dose for you, even if they're currently out-of-stock. Speak up and explain . . .

AdrianUK has previously posted about the Shingrix vaccine in the UK and noted availability from only one pharmacy in England, privately and not subsidized by your NHS. The cost is comparable to the US-unsubsidized cost (about 200 pounds equivalent, I seem to recall). But, of course, that's a small price to pay for a 94% likelihood for deflecting the dreaded shingles bug.

Caven

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