Shingrix vaccine for Shingles

Thanks, Lily, let us know how you do. I had shingles already once and it lasted 6 months, it was terrible. My father, who is 91, has continued pain from shingles that he had 15 years ago. I would like not to have it again. I will talk to my hematologist, but like Sandi said, he probably will not really know what is in it or if I should take it or not. Maybe it was easier when it was a live virus and we knew we could not have it!

Honestly, shingles wouldn't be such a big problem if they never would have started vaccinating for chicken pox (totally unnecessary). Frequent exposure to chicken pox was what kept people from getting shingles. It used to be common in the elderly (70's and 80's) but is seen in much younger people now (teens and children too). I had them when I was 50. They anticipated that this would happen, so invented the shingles vaccine. I'm sorry, guys, but after five years of researching, it's a racket. No one really needs the vaccine; they just need to be exposed to a child that has chicken pox.

www.sciencedirect.com/science/article/pii/S0264410X02001809
www.ncbi.nlm.nih.gov/pmc/articles/PMC5073843/
www.nhs.uk/conditions/vaccinations/chickenpox-vaccine-questions-answers/
www.ncbi.nlm.nih.gov/pmc/articles/PMC2563790/

Good luck with your decisions, everyone!

dru wrote: Hal,
Have you talked to your hematologist about this yet? My primary care wanted me to take it yesterday at my annual physical. I declined because I have had Rituxan less than 6 months ago and so it might not be effective. I will ask my hematologist about it next time I see him-middle of October. I have never had a problem with vaccines. I really don't want to get shingles again.

Dru, I seem to be vacillating on this subject. Hema appointment is next Friday. Got some time yet.
Recall that on another thread I came up with what looked like as association between the Flu and contracting a row 2 response (no IVIG response) ITP. Well, I started a little study on user reports of Shingles. It's early but it looks like there is an association between chicken pox / shingles and row 3 response - which is my response. Ack! Double Ack even!

But for you. For someone that responds to steroids (row 1), I guess there are two worries. One, counts crash and treatment is required. Two, the risk of serum sickness. About the first. I have to think your risk is low. From user reports, it seems counts crashing with the live vaccine is a pretty rare event (once again, crashing only occurring with a row 1 response). On the second. I'd say you need to talk to your excellent doctor about the possibility of spreading the vaccination out over time. Also worth noting. I've seen reports from a few folks who, on or just after Rituxan treatment, developed shingles. That didn't/hasn't happened to you.

So, I've come across some information new to me about shingles. The possibility of leveraging the OTC supplement 'L-Lysine'. Leveraging it either when symptoms are first noticed with a high dose, or, with a low dose as a preventative measure. Take a look at this page:
"L-lysine and Shingles"
Tell me what you think. I looked through some Amazon reviews on those supplements. It looked very encouraging that it is actually effective as a treatment.

Here is another one about how to get L-Lysine via diet:
"What Is the Difference Between L-Lysine & L-Glutamine?"

I've read that, Hal, and planned on buying some L-lysine just in case. I've read good things about it too.

It seems like a no brain'er Sandi. Best to have some, at least to try, in case of emergency need.

I've never had Shingles. Actually I'm wondering that I will never have Shingles as long as I have row 3 ITP, ha, but that is another story.
Tell me Sandi and others that have had Shingles. Is it possible that one's diet was low in L-Lysine at the time of your Shingles break out?

That's a good question, Hal. I have no idea since I've never had those levels tested. I will say that I believe that a person is as sick as their immune system. Since I began taking some good supplements, I've not been sick once. Every time I find a new one that does this or that, I start taking it after I research it. Good nutrition is vital, along with keeping the immune system in a non-inflammatory state (naturally, not with immunosuppressants).

There is so much to learn about the immune system. For example, what's one of the first things we do when we get a fever? Take Tylenol (per doctors). Tylenol depletes Glutathione which is needed to get better and detox the body. How many people ever heard about this or even heard the word "Glutathione"? We've all heard about liver toxicity from acetaminophen, but it's preventable. I really think we do some things backwards in the health care system. It took years to come to that conclusion, after taking drug after drug that only made things worse.

www.ncbi.nlm.nih.gov/pubmed/15878691
www.sciencedaily.com/releases/2002/10/021014072451.htm

I guess it is possible that my diet was low in L-lysine when I got shingles. But, I looked up high l-lysine foods and I do eat most of them. My diet is pretty healthy. It was strange that I got shingles when I was not on prednisone and had been off for more than a year.

Sandi, that first link is a bit of a challenge. I guess I've heard of Glutathione but that's all.

Take a look at this page. Apparently 'L-Arginine' feeds the Shingles beast even though L-Lysine blocks it. So the key maybe a combination of both. A diet low in Arginine and high in Lysine may both be needed.
www.ondietandhealth.com/foods-to-avoid-with-herpes/

In this context, the foods that are mentioned: chocolate, gelatin, collagen, nuts, seeds, coconut, flour (bread?), and milk which are high in Arginine could trigger an outbreak. Ha, so the rule here is to put chocolate goodies next to the bottle of L-Lysine in the cabinet/pantry.

I found this list: chocolate, cola, beer, grain cereals, chicken soup, gelatin, seeds, nuts (especially peanuts), and peas
on this page: www.betternutrition.com/ask-the-naturopath/shingles-remedies

Interesting, Hal. I guess prevention can be key.

I'm working on flu prevention right now. Vitamin D3, Vitamin A, high dose Vitamin C and elderberry are great for that according to my research.

Dru - if you're anything like me, I don't think that I absorb vitamins from food very well. If I did, I wouldn't have low levels of everything all the time. I have to supplement vitamins and minerals constantly to stay in normal levels. Those are just the things that I have tested on a regular basis (Vitamin D, Potassium, Magnesium, B-12, etc). I always wonder what else is low that I don't have tested. Doctors just don't look into those things and give strange looks when you bring them up. If I could afford a Naturopath I'd just do that. I think Prednisone does damage to the gut and causes absorption problems. Well, it's almost a given since it causes stomach acid that interferes with the normal microbiome.

Here's an update on my experience with the shingrix vaccine. It did give me a sore arm and I felt quite achy and fluey for a day or 2 afterwards. My doctor warned me that this might happen. If it affected my platelets, it had a good effect on them. My platelets usually run around 50 K. On Aug 27th, they were 51. I had the vaccine on Sept 13th and then a blood test on the 18th. At this point, they were 84, so either my plates were going up on their own, which is possible, or the vaccine helped.

Not sure how helpful that was....

Lili

Every experience is helpful, Lili. I'm glad you didn't have any problems!

Thanks for the report Lili.
I notice you're not in my notes. I'm putting you down as remission via steroids after 9 years on 2.5mg. That sound about right?

That'a great Lili - those I know who have received it [none are ITPers] have had no problem but a sore arm.
Hope your count stays up!

Thanks, Hal, that sounds exactly right.

@MelA

I also went for a count today, but it clumped in the tubes and I need to redo it, so I am currently frustrated. I have minor surgery on Monday and need counts of 50 K for that. If they're not good enough, I'm back on the dread pred.
Very irritating!

Lili

I haven't had platelets clump in the tubes in years - sorry that happened. Hope all went well Lili and you were able to have your minor surgery!

Regarding shingles & the vaccine - the immunologist ordered a blood test to check for immunity to the varicella zoster virus. I doubt it will be positive for immunity but will be nice to know one way or the other.

Great idea! I'm so glad you are trying that first!

Had the blood work last week Sandi, still waiting the results. Will let you know.

Ok! I'll be waiting and hoping!

Unfortunately - nope, no immunity This is from my immunologist:
"The titer for the varicella zoster virus is positive. This suggest past exposure and it is therefore recommended that the shingrix vaccination be administered. However, while Shingrix is not contraindicated in immunocompromised persons, it is not recommended at this time. My suspicion is that the vaccine restrictions for immunocompromised individuals will be less strict once there is more data out there. For now, I would avoid the shingrix. I will reach out if anything changes or there is new information."

Guess he considers me immunocompromised because of my quite low Immunoglobulin G. So no Shingrix for me right now.

I was literally afraid to open this and read your answer. The same way I feel when I have to open my electric bill!

I'm sorry you are not immune, but SO glad that he's recommending against it. It's too new, and the adjuvants are potent and very inflammatory. There is no post-marketing experience out there yet, but I don't have a good feeling about this one. Time will tell. I must say that I'm happy about the way you handled this!

Sandi I really am afraid of getting shingles a 3rd time - with this neuropathy 24/7/365 to add that type of nerve pain would be devastating. However I questioned a shingles vaccine because the 1st one is live [although after all these years I'm told I can have live vaccines] and the new one is new.

I will be going with a new hematologist next year, I like the one I have [we both are strong-willed, hard-headed and opinionated] - but... My Immunoglobulin G kept going lower and she didn't think it needed to be checked, she later told me she doesn't know much about it or immunizations so that's why she sent me to the immunologist and I'm glad she did. However both of those, especially Immunoglobulin G, she should know about.

Now I will get the Prevnar whatever pneumonia vaccine, feel with the low Immunoglobulin G [in the treatment range but A is all right & M at the low end] I need that. I'm questioning whether I really, at my age, need the pertussis and diphtheria both of which I have no immunity against. Already got the flu vaccine, at my age they give me the "big" dose one - if I could stay home the whole flu season & not go to the grocery store maybe I wouldn't get it

MelA wrote: Unfortunately - nope, no immunity This is from my immunologist:
"The titer for the varicella zoster virus is positive" ...

I thought a 'positive' (titer) indicated one does have antibodies, and therefore immunity.

Also, if one never had Chickenpox (and therefore no antibodies) then one shouldn't get the Shingles vaccine. They should get the Chickenpox vaccine instead. I just assumed the Shingles (old and new) vaccine is a more potent Chickenpox vaccine.

Hal 9000 wrote I thought a 'positive' (titer) indicated one does have antibodies, and therefore immunity.
I agree but would be inclined to say ' a degree of immunity'.

Melinda:
The old shingles vaccine, Zostavax, caused shingles in a lot of people. There is a class action suit against the manufacturer. I had shingles too and lost the use of my left hand for 6 months because it hit the muscle. I'm afraid to get shingles again too but refuse to get the vaccine. They don't test them properly (no true placebo, approve despite red flags, only tested on healthy subjects, new, potent adjuvants). I'm going to order some L-lysine and hope it works. I've read that people have used it to treat shingles and it went away quickly.

Bump up your Vitamin D3 and C. Great flu prevention!

I don't know if this will help your decision or not, but pertussis vaccine isn't doing very well.

www.bu.edu/sph/2017/09/21/resurgence-of-whooping-cough-may-owe-to-vaccines-inability-to-prevent-infections/
wwwnc.cdc.gov/eid/article/6/5/00-0512_article


Hal:
If one never had chicken pox, one should leave well enough alone and not get either vaccine. The varicella vaccine is causing shingles in teens these days.
She is probably showing some immunity because she's had shingles. A titer is a repeated dilution that shows how much immunity there is. Probably not much.

Sandi thank you for the articles on pertussis vaccine, will check them out. Unfortunately whooping cough is making a comeback, somewhat. We have had a number of cases - with my low IgG I'm just leery of every thing and every one [people are walking germ factories!].

Regarding the flu - unless someone believes CNN is fake news: www.cnn.com/2018/09/26/health/flu-deaths-2017--2018-cdc-bn/index.html
"An estimated 80,000 Americans died of flu and its complications last winter, ..."
"One hundred and eighty kids -- this really hit me hard as the father of three kids -- died last year from the flu. And the majority of them were unvaccinated," said US Surgeon General Dr. Jerome M. Adams. speaking at a news conference hosted by the National Foundation for Infectious Diseases on Thursday. "Flu vaccinations save lives."

I already am on an increased dose of D3 and take 500-1000mg of Ester C daily - I will always get a flu shot and did get one the beginning of the month. Still might get the flu, itshay happens - but at least my family & I will know I did what was possible to not get it!

Whooping cough is making a come-back because the vaccine isn't working. That's what the articles are about. Another problem is that the vaccine only prevents symptoms. A person can still get whooping cough from someone else and pass it on; the vaccine does not prevent transmission of the disease. So basically we have people with whooping cough who don't know it, and they are walking around spreading it. The vaccine is causing asymptomatic carriers.
"These data provide a plausible explanation for pertussis resurgence and suggest that attaining herd immunity will require the development of improved vaccination strategies that prevent B. pertussis colonization and transmission."
www.pnas.org/content/early/2013/11/20/1314688110

I know I won't talk you out of the flu vaccine no matter what I say. Just be aware that the flu mists sheds for up to 28 days, meaning that everyone who gets it can be a carrier. That is stated in the insert. I don't know why that brought that one back since it was ineffective the last time they tried it.

It's not that I believe that CNN is fake news, but this is a total eye-opener:
www.nationalacademies.org/hmd/~/media/E9B963EDB28645C5ABCC22467120662D.ashx

British Medical Journal:
"US data on influenza deaths are a mess. The Centers for Disease Control and Prevention (CDC) acknowledges a difference between flu death and flu associated death yet uses the terms interchangeably. Additionally, there are significant statistical incompatibilities between official estimates and national vital statistics data. Compounding these problems is a marketing of fear—a CDC communications strategy in which medical experts “predict dire outcomes” during flu seasons.

The CDC website states what has become commonly accepted and widely reported in the lay and scientific press: annually “about 36 000 [Americans] die from flu” ( www.cdc.gov/flu/about/disease.htm ) and “influenza/pneumonia” is the seventh leading cause of death in the United States ( www.cdc.gov/nchs/fastats/lcod.htm ). But why are flu and pneumonia bundled together? Is the relationship so strong or unique to warrant characterising them as a single cause of death?"
www.bmj.com/content/331/7529/1412.full

I had my regularly scheduled hematology appointment today. My hematologist is out on a leave but I saw the nurse practitioner who I have seen many times before. I asked her about the Shingrix and she said that I should not get it at this time. She said it hasn't been out long enough and given my autoimmune issues it would be better not to take it. Also, for me, I had Rituxan 5 months ago and should wait at least 6 months for any vaccines anyway.

I'm glad your NP is being cautious, Dru. Please remember that this vaccine contains CHO (Chinese Hamster Ovaries) and you may have a reaction due to your sensitivity to rodent cells. Vaccines are very inflammatory anyway.

Here is a site with people describing their reactions to the vaccine in case you're interested (or anyone else). This is all we have for now until post-marketing experience is reported on the inserts.

www.drugs.com/comments/zoster-vaccine-inactivated/shingrix.html

My friend asked her pharmacist about the Shingrix vaccine and he told her it was on back order and wouldn't be available at his pharmacy until late next year. Out of the 6 of us in my clogging group 2 have/had shingles within the past year - not good odds for sure. My neighbor just came down with it.

mrsb04 wrote: Hal 9000 wrote I thought a 'positive' (titer) indicated one does have antibodies, and therefore immunity.
I agree but would be inclined to say ' a degree of immunity'.

Hal, Sandi, mrsb I believe in this case the titer shows I have had or been exposed to chicken pox [had it] and therefore am a candidate for shingles - I am immune to chicken pox but can still get shingles [had it 2x so far].