Hey all, like the sign says, has anyone received Shingrex while on Acala? I need to get it and my GP and Oncologist says to get it. Just wondering what reactions I should look out for after the crap I went through with my 3rd Phizer. I never had reactions to vaccines before but puttin 2 and 2 together, I'm thinking while on the new chemo, things will be different. Also thinking about the efficacy of said vaxx'es (or vaxxi ? Not looking forward to my upcoming flu shot and pneumonia shot as well but gonna do, what I gotta do. Any info or experiences would be helpful.
Thanks..
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chirish
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I haven't taken Acalabrutinib but, I got the shingrix while on Ibrutinib and I suffered with severe muscle and joint pain like I had never experienced. Night and day different parts of my body for 7 months. my oncologists stopped the Ibrutinib but the pain didn't go away. I was in remission thank God. Steroids only worked some while on them. I ended up in emergency room and they gave me pain meds and anti-inflammatory, didn't phase it. Finally I saw a functional medicine clinician and he started me on Low Dose Naltrexone and it worked. I am really careful what I eat. I avoid food that causes inflammation. Just so you know I do react and experience side effects with a lot of medicine. I felt bad for 2 days after pneumonia and flu vaccine. I also experienced severe side effects when starting Ibrutinib, but eventually was able to tolerate 1 cap a day and went into remission with in 9 mo. If you have never had side effects from other vaccines then you are probably going to be fine. this is just my experience. My oncologist said when I needed treatment again I would be taking the Acalabrutinib because of less side effects. Good Luck
Many of us have had no adverse reactions to both Shingrix shots, but as with all vaccinations they "poke" your immune system to get a response.
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With CLL the immune system is wonky already and too much or too little response is possible, but we know that the adverse effects of Shingles are far worse and can be permanent.
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Here is a link to the 105 times Shingrix was mentioned in a previous post.
Respectfully disagree... Shingrix super safe and effective. I had bad case of shingles...Hellish... worse than CLL . I got Shingrix asap once available. Are you confident acyclovir will prevent it? Curious ...any news that acyclovir will prevent covid? I think not.
I did not have any problems with my shingrix shots while on ibrutinib.
I am only understanding now that taking vaccines on a btk inhibitor drug makes a vaccine antibody response unlikely.
I don’t regret getting it. The vaccine still still might be affording me some protection. I take a valtrex a day as part of a belts and suspenders approach to protecting against shingles.
Good thinking. Valtrex has been used to prevent herpes in horses. Seems reasonable to take it as prophylactic. No real downside, cheap, safe and might prevent a much worse outcome.
There are antibody tests for shingrix antibodies. They are referenced in shingrix studies as proof of efficacy.
I have not heard of these tests being used outside of a clinical trial for a particular person wanting to know if they got antibodies, but I would imagine this could be done. It might not be covered by insurance as it my not be considered a particularly useful test. We don't know what the lack of an antibody response means or how the results of such a test would modify our behavior, other than to take valtrex prophylactically I guess.
I am already doing that. I may or may not be protected by shingrix so I add valtrex. If valtrex was a med with a bad side effect profile, I might not take it until I actually had shingles.
Noticed reference to a chemo. I was told BTK inhibitors are not chemo. Discuss this with your physician. Have been on ibrutinib for 4.5 yrs.. Hoping this may ease your mind as you move forward with upcoming decisions. Follow your physicians suggestions. I did not get Shingrex vaccine. Had one bout of shingles yrs ago and last yr while on ibrutinib with mild symptoms. Everybody reacts differently to meds and vaccines. Hoping that any decisions you make will be the best for you. Wish you the best quality of life.
I was into my 4th month on Acalabrutinib when I had my first Shingrix shot. No real serious side effects except for a swollen arm. I had my second Shingrix shot 4 months later (January, 2021) and it went over better than the first time. I had a severe case of shingles 6 years ago and thought there was no need to take the Shingrix shots, but my oncologist strongly advised me to take them. He didn't think there would be a serious reaction because of the Acalabrutinib medication and he was right. I'm happy I did as I have the assurance that I have solid protection to not suffer through another shingles episode.
I wish you were right in saying that "I have the assurance that I have solid protection to not suffer through another shingles episode." Unfortunately, while Shingrix clinical trials have shown it to provide much better protection for older folk than the live attenuated Zostavax vaccination, which we shouldn't risk, it's not solid protection. That is why many CLL specialists recommend staying on Famvir/famciclovir or Valtrex/valaciclovir.
You may be right, but according to my oncologist, the Shingrix vaccination is the only way to protect against shingles and more significantly against postherpetic neuralgia (PHN), which is the most common complication from shingles. PHN is the major concern for me. You may have a good point with the Famvir/famciclovir or Valtrex/valaciclovir option, but it was not given to me in Western Canada. I find your comment about valaciclovir interesting because when I had my shingles outbreak, I was given a prescription for valaciclovir for 7 days to lessen the severity of the outbreak.
Shingrix isn't 100% effective in people without CLL, so given our community experience with other excellent vaccines for COVID-19, I don't see how Shingrix can provide solid protection. I'd hate to experience shingles too, particularly permanent PHN.
I am on acalabrutinib and and also have had my shingrix shots. I knew when I took the Shingrix vaccine that is was unknown how much protection it would give me, if any. I did not know back then when I took the shot, but know now because of covid vaccine studies with people with cll, that being on a btk drug when I took the shingrix vaccine very likely significantly reduced my chance of developing shingles antibodies.
Even before those studies came out, my cll doctor suggested I take a valtrex a day as a prophylactic for shingles.
I would encourage everyone with cll, shingrix vaccinated or not, to have a shingles discussion with their cll doctor.
The question I would pose to them is whether there is any risk to long term use of antivirals like valtrex and how does that risk compare to the risk shingles presents to us. I have had no side effects whatsoever with valtrex and am aware of many people that take it basically for life for herpes and other related infections. Shingles is a virus from the herpes family.
I don't see the downside of adding valtrex. I think everyone with cll should discuss with their doctor whether they should get the shingrix vaccine, take antivirals prophylactically, or do both.
Thank you. You make a very good point about having a discussion with the specialist about taking valtrex prophylactically as Shingrix is not 100% effective. The other part of the discussion would be the long-term usage side effects and efficacy of valtrex. Lastly, would my drug plan cover the costs. It should prove to be interesting.
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Not looking forward to my upcoming flu shot and pneumonia shot as well but gonna do, what I gotta do. Any info or experiences would be helpful.
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