Shingles vaccine for cll patients

[Splashes]

I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give me shingles. Well, too late I learn there is a shingles vaccine effective for cll patients. Somehow that info or I fell through the cracks knowing about it. So, in case anyone else lives in that crack, be informed and ask your doctors about a shingles vaccine. Carry on and thrive, dear fellow cll friends.

[cllady01 Former Volunteer]

Welcome Splashes, Sorry you have Shingles---Please read the following CDC linked article.I hope your COVID episode is well behind you and has left no symptoms hanging on.

Sorry also that you hadn't heard about Shringrix!! Some Drs. have not seemed to see the urgency that it actually is. But there has been so much going on in the last 2 and almost 1/2 years now that the urgency has not been tended to. I asked my CLL Dr. early on for Acyclovir tablets to take daily. They do not keep one from getting the shingles, but can help to make the case less severe (shorten time dealing with the sores.)

You CAN have the Shringrix Vaccine After your shingles have cleared up. And it it two shots about 60 days apart.

I'd suggest also, getting Acyclovir tablets to have on hand. They must be used as early as possible in the onset of Shingles to be of help. But, ask the Dr. about them now if you can get any possible benefit now.

cdc.gov/vaccines/vpd/shingl...

Best wishes for full recovery soon.

[Splashes in reply to cllady01]

Thanks for the info and your kind response. Covid destroyed 40 percent of my lungs in 2020 (pre-vaccine). After 12 months, I now need no supplemental oxygen, I'm 73 years old, and climbed to the top of an Adirondack mountain last summer. Woo Hoo! I have 14 grandchildren, so I need to keep up my energy levels. lol. Loving life more every day and so thankful for God and our good doctors saving my life twice!

[BobbyFour]

I am sorry to hear about your shingles, but glad you have done so well on Ibrutunib!

[Garston]

Thank you for sharing really good to know .Take care.

[CCgroup]

I have del P17, and have been on ibrutinib for 2 years. My bloodwork is quite good. Recommendations on this site encouraged me to get the shingrex vaccinations. It is not available in Costa Rica, where I live, but on a visit to Victoria, Canada for Christmas I got the first jab at a pharmacy. The second dose I kept in the refrigerator and brought it back with me in a cool pack. Apparently it travels well as long as it is kept cool. There was no side effects whatsoever from either it or the flu jab I got at the same time. I know someone who had shingles and definitely feel it is worth the effort to prevent it. I'll get the next jab here next month - meantime it rests in the fridge.

[Corkyrissa]

Hi Splashes Glad you survived covid. Sorry about your ordeal with shingles. I’m a 77 yr old female with CLL on imbruvica for 5 1/2 Yrs and have great numbers. I had shingles 9 yrs ago no bad rash (2 pimple like things on my back) but excruciating pain. Had the shingrex vaccine 4 months before.

On January 22 2022 I started to have bad back pain so I went to see my pcp. He dx me as pulled muscle. Then by Saturday the 4 th I was in such pain I went to the hospital. They checked my body and ruled out shingles. I kept asking are you sure it’s not shingles, the pain is following a pattern from my lower back and wraps around to my stomach , where 2 spots appeared later.

Well they gave me ct scan, ultra sound, and mri. They kept me sedated overnight and next day I went home. Hospital stay was awful because of one dr who scared me by telling me I had gall stones and would never operate on me because of all my

Conditions and told me he wasn’t a surgeon. Well anyways I went back to my

Pcp and he said you have a tiny kidney stone, very small gall stones.

I asked him again I think this is shingles and asked him to check 2 things on my lower back that hurt and he said they are pimples. but I had no other rash at the time. I went home with a script for pain for my so called pulled muscle pull.

Then on Monday on my belly appeared a small circular red spot and 1 tiny red spot 3-4 inches away from each other. I looked in a 3 way mirror and saw the 2 things on my back and the 2 new on my belly were in line of each other. So my daughter called the dermatologist and she took a biopsy but said none of the spots looked like shingles. She gave me Valtrex and murpiracin just in case. The results came back as shingles. You can have shingles without a rash I found out. They could give you a blood test and start you on meds. So any tiny things that appear can be shingles and dr should start you on meds. I will get my shingrex vaccine as soon as I am over this crazy ordeal. The pain is so bad. Sometimes Drs should listen to patients because we know our own bodies I wish you a speedy recovery Splashes. You have had a tough time with covid and shingles. God Bless you. ❤️🙏🏻🌹

[Splashes in reply to Corkyrissa]

Wow! What an ordeal! Sorry for your pain. I must have mild shingles because other than some itching and stinging, I have no deep pain. Praying this does not develop into worse. At the moment, I have some blisters, but not the pain. May the Lord keep us well and give our doctors His Wisdom regarding our bodies. Have a good day.

[Corkyrissa]

Sorry for the longggh post 😜

[Pin57]

Wow sounds like you went thru covid hell, sorry to hear…. But your climbing mts now that’s awesome n congrats on your recovery.

Thanks for posting the Shingles warning and that there is a safe non-live vaccine we can take to fight that. This forum is a great resource.

Speaking of resources, below is a link to one of the best HU pinned resources posts ever. It’s all about suggested vaccines for CLLers, well written/updated by PaulaS …. it’s at:

healthunlocked.com/cllsuppo...

[Splashes in reply to Pin57]

Thank you for the great info re vaccines. Thank you for caring. Keep well.

[PaulaS Volunteer in reply to Splashes]

Hi Splashes,

I've just updated the vaccination post again, including recommendations for 4th Covid jab.

Paula

[Splashes in reply to PaulaS]

Thank you.

[lexie]

I finally got the OK for the Shingrix vaccine from my CLL specialist but was warned that is only 45% effective for CLL patients. I had Shingles in 2006 and the live vaccine in 2015 at diagnosis, a no-no. Weighing the 45% in my mind, whether it is a waste of time and money as my local hematologist also thinks.

[Splashes in reply to lexie]

Hmmmm. Thoughts to ponder, pray, and ask doctor about. Thank you for your thoughts.

[caven in reply to lexie]

I guarantee you that if you'd ever experienced the pain of shingles you'd never ponder avoiding the benefit of Shingrix even if the possibility of it actually working was only 10% ... let alone 45%!

The inconvenience and cost is a minimal offset compared to the excruciating pain that shingles can bring.

Caven

[lexie in reply to caven]

I stated that I had shingles.

[Splashes in reply to caven]

I have every intention of getting shingrex.

[rawfoodjunkie]

I asked my consultant and my doctor for Shingrix, the new non-live shingles vaccine. My consultant said it was a reccommedation only and it did not mean that CLLers should necessarily have it and so hasn't reccommded to my GP that I should have it even though I've been on W&W for 12 years and I'm 71. When I asked my GP he knew nothing about it and seemed very annoyed that I should be asking! I asked him again, but so far no response. But then I only just found out that I wasn't coded on my medical records as being CEV. So now I know why I had to keep emailing my GP to get all of the 4 shots I was entitled to. It's been a nightmare.

[mrsjsmith in reply to rawfoodjunkie]

But regardless of your incorrect coding Shingrex from last September was available to all patients between 70-80.

Colette

[Senecio in reply to rawfoodjunkie]

You need to get your consultant to write to your GP insisting that you are offered Shingrix. Mine did, and I was offered it a couple of weeks later. Meanwhile I am still waiting for my fourth Covid vaccination - although the side effects of nos. 2 and 3 were so 'orrible I am happy to wait a bit!

John

[Astro617]

Oh dear Splashes. I hope you are able to take some antivirals to help ease your bout of shingles. I have heard they can be very painful. Thank you for your post about Shingrix! Wishing you well.

[Splashes]

Thank you! Dr. prescribed valacyclovir and silver sulfadiazine cream. Must have mild case because all I have is minor itching and sting. Perhaps after covid ate 40% of my lungs, I just don't feel pain anymore. ThNks for your kind thoughts. Doing well.

[PaulaS Volunteer in reply to Splashes]

So glad you don't feel the pain any more, Splashes. Phew...

[kitchengardener2]

I was given two shots of Shingrix the dead shingles vaccine. My husband just had one shot of regular shingles vaccine. Think we are advised to avoid contact with children who have chicken pox and there are lots of children contracting this just now. Could be a problem with grandchildren visiting etc.

[Splashes in reply to kitchengardener2]

Thankful my shingles healed after 3 weeks.