Shingles Vaccine Yes or No Part Deux

[minkeygirl]

There is a thread from a year ago but I wanted to bring it up again since I'm seeing tons of commercials about getting one.

I don't get flu vaccines but when I did, about 10 years ago I had no problems. But I was much healthier then.

I tested positive for Varicella Zoster which I find interesting because I did not have Chicken Pox. I had something which they ultimately decided was German Measles. Maybe they were wrong.

I'm in no rush to get this vaccine but anything that can be gotten I'm getting and I'd like to avoid the pain of shingles.

So what is worse? Shingles or what the vaccine could do?

Has anyone had the vaccine? What problems have you had? How sick were you when you got the vaccine? All this plays a part I think in the decision to get the vaccine.

Minks

 

[SOC]

The shingles vaccine is simply the injecting of a weakened, but live, chicken pox virus into your system. Basically, it's a chicken pox booster shot with new advertising. Generally speaking, live virus vaccines are not recommended for people with immune dysfunction including autoimmune diseases.

Add to that the fact that chicken pox (varicella zoster) is a herpesvirus and herpesviruses can reactivate each other. Since there is some question about the ability of PWME to control herpesviruses, a live herpesvirus vaccine seems like a bad idea to me.

My daughter, who was largely in remission for the first 5 years of ME/CFS, was sent into a major long-term (years) crash after a chicken pox booster which reactivated her HHV-6. I wish we'd known then what we know now.

Both the ME/CFS specialists I've seen have advised against live virus vaccines, but suggest killed virus vaccines if you tolerate them. My daughter and I both tolerate killed virus vaccines and get flu shots (only the killed form, not the live one) every year. So I'm not at all anti-vaccine, but as an ME/CFS patient, I wouldn't touch the shingles vaccine with a ten foot pole. Way too risky, IMO.

 

[minkeygirl]

but as an ME/CFS patient, I wouldn't touch the shingles vaccine with a ten foot pole. Way too risky, IMO.

Thanks for the explanation. I'm with you sister!

 

[SickOfSickness]

My daughter and I both tolerate killed virus vaccines and get flu shots (only the killed form, not the live one) every year.

I didn't know we could choose. Is it hard to find the killed form? Are they going to look at me like I'm crazy for wanting that? They will claim it's less effective.

 

[SOC]

I didn't know we could choose. Is it hard to find the killed form? Are they going to look at me like I'm crazy for wanting that? They will claim it's less effective.

The flu shot is the killed form, so it's usually not a problem. The nasal spray is the live virus one. We tell the nurse that we have an immune disorder and can't have live virus vaccines, so we want to verify we are getting the killed virus one. They are always very nice about it.

This is from the CDC:

What kinds of flu vaccines are available?

There are two types of vaccines:

• The “flu shot” — an inactivated vaccine (containing killed virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.
  
  There are three different flu shots available:
  • a regular flu shot approved for people ages 6 months and older
  • a high-dose flu shot approved for people 65 and older, and
  • an intradermal flu shot approved for people 18 to 64 years of age.
• The nasal-spray flu vaccine — a vaccine made with live, weakened flu viruses that is given as a nasal spray (sometimes called LAIV for “Live Attenuated Influenza Vaccine”). The viruses in the nasal spray vaccine do not cause the flu. LAIV is approved for use in healthy* people 2 through 49 years of age who are not pregnant.

More info is available at the website.

 

[JT1024]

I've avoided vaccines for numerous years now and I have not gotten ill with flu or shingles. I work in a Microbiology Lab and have exposure to many pathogens. Most of my colleagues have also refused the flu vaccine to date .Some healthcare organizations are forcing providers and clinical staff to get vaccines or be let go. That is not the case where I work... yet.

I do know that my immune system is in bad shape since I've had symptoms and lab results indicating viruses/bacteria that should be under control are not now.

Like others, I'm not totally anti-vaccine. However, the real risks are not divulged to the public and those with neuro-immune disorders may not be able to handle the vaccine (the antigens whether attenuated, or dead) and the adjuvents included with them. We still are not told if there is residual "adventitious agents" in these widely publicized vaccines either.

Adventitious agents are under intense scrutiny by this group: http://cbi.mit.edu/research-overview/caacb/

Of course, this will not make headline news....

 

[SickOfSickness]

The CDC says people with a weakened immune system should not get one. http://www.cdc.gov/vaccines/vpd-vac/shingles/vacc-need-know.htm#notGet-vaccine

Also are you over 50? The CDC says:

"About half of all cases occur in men and women age 60 years or older."

"The shingles vaccine is approved by FDA for people age 50 years and older. However, CDC does not have a recommendation for routine use of shingles vaccine in people who are 50 through 59 years old."

 

[Sea]

Apart from the question of getting the vaccination with our illness, if you've tested positive for Varicella Zoster that means you've already been exposed to the virus. Isn't the vaccine only for those who haven't yet been exposed?

 

[SOC]

Apart from the question of getting the vaccination with our illness, if you've tested positive for Varicella Zoster that means you've already been exposed to the virus. Isn't the vaccine only for those who haven't yet been exposed?

No. Our bodies should produce antibodies, and therefore protection, against the illness once we've had it, but for a variety of reasons the antibody production reduces over time, leaving us susceptible to reactivations. They're finding that the weakening immune system with age combined with the length of time since exposure to varicella zoster is leaving older (oldish? ) people more susceptible to reactivation, which shows up as shingles. So they're suggesting a booster -- another exposure for the purpose of increasing the antibodies. Probably reasonable for healthy people. Not so sure it's a good idea for us.

I've had shingles twice since I've developed ME/CFS. I'm pretty pain tolerant, so maybe not typical here, but I found that while it was annoyingly painful, it wasn't excruciating. (It would have been worse if I'd been working at the time and therefore had to wear a bra rubbing on the shingles rash. Loose garments are a must during a shingles episode.) I'd much rather risk having shingles again, as unpleasant as it is, than risk reactivating HHV-6 or EBV.

 

[IreneF]

I haven't gotten any vaccinations because I hardly ever leave the house, so the only people I'm exposed to are my close relatives. They occasionally bring home infections but I don't get them. Sometimes I can feel myself throwing them off, though.

I've also gotten much more alert to cleanliness and hand-washing. I sometimes wear disposable gloves if I handle dirty laundry or dishes.

 

[Little Bluestem]

I haven't gotten any vaccinations because I hardly ever leave the house, so the only people I'm exposed to are my close relatives.

This will not do any good in the case of shingles, since it is caused by reactivation of virus that are already in your body if you have had chicken pox. I am not, however, saying that you should get the vaccination, especially since I do not even know if you have had chicken pox.

 

[Jenny]

Has anyone had the shingles vaccine Zostavax? My GP surgery has just asked me to come in to have it. I believe it’s a live vaccine so I’m a bit wary.

But my mum had shingles several times very badly and was in severe pain for years. I don’t want to go through that.

 

[Cipher]

Has anyone had the shingles vaccine Zostavax? My GP surgery has just asked me to come in to have it. I believe it’s a live vaccine so I’m a bit wary.

But my mum had shingles several times very badly and was in severe pain for years. I don’t want to go through that.

Shingrix is better and doesn't contain live VZV.

 

[TiredBill]

I had shingles when I hit 50.

I consider myself to be very highly pain tolerant. I played football (American) and rugby.

The pain of shingles brought me to my knees. Quite humbling. It was pure torture.

I was strongly considering Shingrix and likely would have gotten it, but Covid hit and I've delayed. Hoping my luck holds.

Bill

 

[Rrrr]

Thank you all for your comments. I am considering the shingles vax. If anyone has any new info, please share. I can feel tingling and some pain in my forehead and think it is shingles. I wonder if I can get the vax when I can already feel tingling and pain...? thoughts welcome!

 

[Pyrrhus]

If you're talking about the Shingrix vaccine, note that it can be taken at the same time as valacyclovir (Valtrex).

The other shingles vaccine, Zostavax, which was recently discouraged in the U.S., was a live vaccine that could not be taken at the same time as valacyclovir.

I was already taking valacyclovir for the sole purpose of preventing shingles when I had my first dose of Shingrix. My doctor advised me to stop taking valacyclovir before receiving the Shingrix vaccine. That turned out to be a mistake, as I developed meningitis after the vaccine, which had to be treated by re-instating the valacyclovir.

Anyway, that's my story.

 

[Pyrrhus]

https://twitter.com/i/web/status/1533588152400617474

 

[Jyoti]

Debating this question not five minutes ago..... So glad to see the various experiences and opinions. Very very helpful.
Thanks for asking @Rrrr and thanks for your contributions @Pyrrhus!