Hi all... Hope you are all in good condition and happy
I have just been informed that with the Imbruvica long term treatment we become vulnerable for the shingrix infection.
So I am enquiring on which is best: take the shingrix vaccine or have a medication life time that protects against the shingrix (I don't recall its name) ?
Personally, I believe that the vaccine is taken once and that is it as opposed to take medication for life time.
But honestly, I am afraid that, as the shingrix vaccine is relatively new vaccine (since 2018), it might prove to develop serious diseases similar to what happened with certain Covid vaccines!
So what are your views and professional advice?
Thanks much!
Written by
AshGS
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I've had the Shingrix 2 shot regiment. 1st shot had only mild vaccine symptoms. 2nd shot (2 months later) I was sick for 3 days with a very enlarged lymph node near the shot site that took 3 weeks to resolve. My doctor told me after the 2nd shot incidence that I should have spaced out the 2nd shot by at least 4 months. My wife had the same 2 shots last year and spaced the shots 6 months apart and had no adverse reaction.
It's not just people on treatment for CLL. Since 2023 UK NHS Shrigrix is recommended for all immunocompromised over 50 years old. It's also recommended for everyone over 65.
Had the first one last month, awaiting the second. Had 2 days of fever on the first.
What surprises "happened with certain covid vaccines"? Some were withdrawn from use due to a higher than acceptable level of adverse events, but these were still less than the risk from actual COVID-19 infections. There was a huge amount of misinformation about the vaccines. I was even told I and many millions of others would be dead from having them, but amazingly, billions of us have survived 2 years beyond that forecast mass extinction event. I've collated and provided evidence refuting many of the misinformation and disinformation statements here. healthunlocked.com/cllsuppo...
You can not get shingles if you haven't had chicken pox. But you don't have to be a child to get chicken pox, just not had it before or not had the chicken pox vaccine.
You cannot get shingles from someone with shingles or chickenpox.
But you can get chickenpox from someone with shingles if you have not had chickenpox before.
When people get chickenpox, the virus stays in the body. It can be reactivated later and cause shingles if someone's immune system is weakened.
This can be because of stress, certain conditions, or treatments like chemotherapy.
The antiviral Acyclovir is an alternative. It is also recommended after shingles if vaccinated or having shingles more than once. It's not without the possibility of side effects.
Hi there AshGS. I had shingles 6 years ago and I have been taking Voltrex (Valacyclovir) since then with no side effects. I am also on Ibrutinib for just over 6 years. I just take both meds in the morning and it's not an issue. Just part of the morning routine. I had chicken pox 30 years ago. Not sure if my info will help you in your thoughts on the matter. Keep well 😊
The old vaccine for shingles was a "live" vaccine which meant that we CLL sufferers couldn't take it. Shingrix was developed as a non-live vaccine (by the way, the illness is shingles, the vaccine is Shingrix) this has meant that we can now be protected in the way we could not before. It is not a disease to be trifled with; it can be really nasty if it affects the face. If you have had chicken pox in the past, the virus is lurking in your system so if you are offered a vaccine, it is far better to avoid the risk of developing shingles. Any medical procedure carries a risk but you have to balance the risk of the procedure against the risk of the disease and in this case the risk of the disieas is far worse than any potential risk from the vaccine.
I've been on ibrutinib for about 5 1/2 years. I got the double shot required at a pharmacy in Dec 2021 and have had absolutely no reaction to it. When I was looking into it at that time I came across the following article.
I'd say go for it. Shingles is a nasty thing to have.
Dan
Re: Shingrix OK For Immunocompromised Adults
From: Rick Furman Date: Fri, 30 Jul 2021 08:43:32 EDT
Shingles is the result of the varicella zoster virus which causes chicken pox and shingles. The primary infection, which universally happened during the first few years of life before vaccinations for it were approved, is chicken pox. The virus lies dormant in the spinal cord and emerges later in life as the immunity wanes or during periods of stress. What the vaccine does is “refresh” the immune system’s memory of the virus in order to maintain a strong cell mediated immunity against the virus and help prevent its recurrence.
-Shingrix is extremely effective and not a live virus and should be taken by everyone. 1 out of 3 adults over the age of 65 years will develop shingles and the complications and discomfort can be life-long (post-herpetic neuralgia). Patients who are immunosuppressed are more likely to develop shingles and more likely to have life-long complications. The vaccine is currently stated to be 90% effective in healthy adults, and very importantly, 60% effective in patients who are post-autologous stem cell transplantation and are thus very immunosuppressed. Of note, efficacy is measure not just by the prevention of recurrence, but also by shortening the duration and severity of discomfort and lessening the incidence of post-herpetic neuralgia.
-In the US, Shingrix is currently approved for everyone over the age of 50. It is supposed to be one dose for life. There are still other shingles vaccines available, but these should not be used by anyone. These other vaccines are live vaccines, and more importantly, inferior to Shingrix in effectiveness. I do recommend everyone receive the vaccine.
I have been advised that the Shingrix vaccine is 2 doses 2-6 months apart. If a medical professional would like to confirm, that might be good. I am a CLL patient, 17p deletion, treatment with Ibrutinib 420/daily ~ 8 years.
I have been on Ibrutinib for 6 years in a Clinical Trial. Mayo’s put me on Acyclovir (400mg twice/day) at the outset of the of the trial and I haven’t had any issues. Whether or not it is best approach I don’t know. My rationalization for staying with the Acyclovir aside that it seems to be working, is that I am not sure how protective the vaccine would be given that I am immunocompromised. Take care
I had the old “live” shingles vaccine years ago. I am also taking acyclovir every day with no adverse reaction. I asked two different doctors if I needed the new Shingrix vaccine and both said no as I’m still getting some protection from the first vaccine and along with the acyclovir, I should be fine.
I was advised to take two doses of the Shingrix vaccine before starting my second treatment for CLL with Rituximab and Venetoclax. Accordingly, I received my first shot of the Shingrix vaccine last week. There was a small bump at the injection site, which reduced after three days. During those three days, I experienced a slight cold and a low-grade fever. Dafalgan helped to overcome these minor side effects. Therefore, it is highly recommended to take both doses of the Shingles vaccine.
The chances of a serious adverse reaction to the Shingrix vaccine are very low. It is given as two intra-muscle injections about 6-8 weeks apart. I experienced a mild fever and feeling unwell in the evening but was fine the following day.
Although Shingrix was developed with immunocompromised recipients in mind, as a vaccine its efficacy partly relies on a B cell response to the virus. This response is likely to be compromised by treatment with Ibrutinib, although it should not affect your T cell response, which may be enough to suppress the latent varicella zostra virus and protect against an outbreak of shingles.
As others have pointed out, taking a prophylactic antiviral tablet like Acyclovir or Varicyclovir is the alternative to Shingrix. I take 2 x 400 mg/ day Aciclovir with no discernable side effects.
I was taking The mbruvica for 5 years, then was switched with Venclexta and got shingles after few months. With Imbruvica a got constantly UTI. Thx, Nata
Thanks dear friends for your valuable info and insights.
Would also love to have your views on getting the shingrix vaccine for my sister who has an auto-immune desease in Kidneys and is being on an immuno-suppresive for 2 years now.
That's something your sister needs to ask her specialist about, but note that "On July 23, 2021, the FDA expanded the indication for RZV to include adults aged ≥18 years who are or will be at increased risk for shingles because of immunodeficiency or immunosuppression caused by known disease or therapy.2 On October 20, 2021, ACIP recommended 2 doses of RZV in adults aged ≥19 years who are or will be immunodeficient or immunosuppressed."
I had the live Shingles vaccination in my mid sixties, I think it was, and understood that I would never need another one. While I was on treatment I heard about Shingrix and that all CLLers should have it. My GP 's surgery which is excellent said initially that it wasn't necessary but that if my consultant wrote they would administer it. He wrote and I had it. The first one presented no problems; the nurse knew there had to be a gap before the second (I can't remember how long now) and warned me that I might suffer after it. I did. My arm swelled up and was painful. I felt ill and fluey for several days.
I think a lot of surgeries don't know that the guidance has changed on who should receive it.
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