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Shingles vacination, (Zoztramax ?? -- Worthwhile ?

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11 years 8 months ago #39906 by scooter2y
My Medicare Advantage Plan has told me that getting a "Shingles" vacination (from Walgreens, a primary care doc, etc.) would be a GOOD thing. ???
I'm a 70 yr old male, had chicken pox - never shingles,-- my platelet count runs about 55-65, taking NO medications for ITP. I've heard that the vacination will NOT absolutely prevent shingles , but it will reduce the possible severity, such as meningitis,etc.. and you can get shingles more than once , with or without having the shot. I'm thinking of getting the shot.
Comments ? horror stories ? thank you -- scooter2y -- Feb 23,'14
11 years 8 months ago #39907 by
I was told not to get the shingles vaccination - it is a live virus.

I have had shingles, 2x.
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11 years 8 months ago #39908 by Sandi
I am probably not the best one to answer, but I'll give you my view.

I'm not a vaccine person. Having more than one autoimmune disorder, I am more afraid of the vaccine side effects than the illness, although I did recently have a tetanus shot when I got punctured by a rusty nail. I felt that one was necessary.

I have not had the shingles vaccine, and I got shingles last May. It was weird, started with a nerve buzzing sensation in my upper, inner arm. I didn't know what it was, and just chalked it up to the neuropathy that I have off and on. I also lost all muscle in my left hand, but thought that was from holding an orbital sander while working on my deck. For two days, I could barely use that hand. That night, the area on my arm began to burn, so I looked at it in the mirror. I saw the blisters and knew right away what it was. It was midnight, but I went to the ER anyway to get started on the anti-virals asap.

It never did spread since I caught it so fast, but it damaged the muscle. I spent a few months in PT working on getting the use back. I had no fine motor skills, couldn't rip a piece of paper in half, pull up a zipper, tie my shoes. It's 9 months later and I still do not have full use, but it is enough to get by. I am lucky that I have no residual nerve pain.

A friend of mine just had shingles in December. She spent 3 days in ICU - she did get meningitis. She is having residual nerve pain. She had shingles for over a week before it was diagnosed because she had no rash. Both of us have Lupus and the shingles risk is greater for several reasons. From now on she chooses to get the vaccine. I still do not. Maybe I'll change my mind in the future, I don't know.

So, there are two stories. Maybe that will help.
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11 years 8 months ago #39909 by dru
You should check with your hematologist. Mine said it is not a good idea for me since it is a live virus.
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11 years 8 months ago #39912 by CindyL
I asked my family dr. about getting it, but he said it was expensive. We don't have coverage, so I didn't get it. My counts are normal.
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11 years 8 months ago #39921 by Winnifred
The shingles vaccine is a freeze dried virus that is mixed with a liquid just before being given. Like any vaccine may or may not trigger an immune response. It is highly recommended for the older population as they are at higher risk for shingles and complications related to shingles. In simple terms shingles is a form of the chicken pox virus. It can lay dormant and rear up in the form of shingles.


Shingles can be painful or just itchy usually forms a rash in a line from center back to the side of a person torso usually along the lower rib cage area. That said can also show up in other areas. People who develop shingles can have nerve pain that lingers long after the rash disappears. Like Sandi said some people feel the symptoms before the rash appears.


Yes the vaccine is supposed to prevent shingles. Vaccines are designed to create an immune response to either prevent an illness or lesson the case of the illness.

You should speak to your hematologist/ family doctor about your risk of getting shingles and the risk of getting the vaccine it is an individual choice and you need to weigh the risk of going without the vaccine to the risk of side effects of getting the vaccine.

The most common side effect from getting the vaccine is soreness at the injection site. Mild fever or feeling run down.
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11 years 8 months ago #39930 by danyitoo
I had shingles a few years before I was diagnosed with ITP. I asked my hematologist about getting the vaccine and he too said no because it was a live virus...
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11 years 8 months ago #39931 by poseymint
They say even if you've had shingles you should still get the vaccine.?? I don't understand that. Wouldn't having the disease create an immunity just as strong and effective (or more so) than the vaccine?

Vaccines worry me now, not because they lower my platelets (which they do). Because like Sandi mentioned, they can trigger other auto-immune problems. I mentioned in another thread that I got rheumatoid arthritis flare up and shingles from the flu vaccine in 2011. My doctor didn't give me the antiviral, wanted to wait and see. In this case that was okay because I had no pain. Just a blistering patch on my lower back for about 6weeks.

This year I again got the flu shot and had another flare up of arthritis. My hands are still stiff and painful after 2 mos. They say there are no side-effects from these vaccines, but hey for me I'm beginning to accept vaccines make my immune system crazy- it does not like them.
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11 years 8 months ago #39932 by vaughanderek
Replied by vaughanderek on topic Shingles vacination, (Zoztramax ?? -- Worthwhile ?
I am in the elderly group and at risk of getting shingles as I had chicken pox when a young boy. I was also warned about getting shingles when I started taking MMF and prednione. But when it came during a winter break in Tenerife I was taken by surpprise and thought I just had a nasty insect bite which appeared as a nasty series of bite marks across the one side of my abdomen with very severe pain. The pain lasted 6 months and the Doctor said my case was mild..
In the UK elderly patients are now offered the shingles vaccination but patients who are immunosupressed should not be given live vaccines .Because you can get shingles more than once I feel like many others simply left in limbo but it just doesn't worry me as I take life as it comes.
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11 years 8 months ago #39943 by Ann

poseymint wrote: They say even if you've had shingles you should still get the vaccine.?? I don't understand that. Wouldn't having the disease create an immunity just as strong and effective (or more so) than the vaccine?

Having the disease does afford good immunity for a while but the effectiveness wears off in time. The idea is that the vaccine maintains the immunity.
11 years 8 months ago - 11 years 8 months ago #39946 by

poseymint wrote: Wouldn't having the disease create an immunity just as strong and effective (or more so) than the vaccine?


Man I wish having the shingles (I really do not like calling it a disease) would create an immunity but it sure does not!! I've had shingles twice - and believe me 2x was 2x too many!!

If I had not had ITP and if I had not had shingles I would for sure get the immunization!! I watched my friend deal with shingles that was close to her eye and she was in danger of it doing damage to her optic nerve & eye. I watched my husband's uncle deal with severe postherpetic neuralgia pain after his shingles cleared up - he had that severe nerve pain for many years and died with it. No thank you - I'd rather have the vaccine and hope for the best - but that's neither here nor there since I cannot have a live vaccine.

www.cdc.gov/vaccines/vpd-vac/shingles/hcp-vaccination.htm
"Zostavax is a live virus vaccine."
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11 years 8 months ago #39951 by poseymint
Wondering what your doctors say- why shouldn't ITPers get live vaccines? I've read its because our immune systems might be suppressed from medications, and that might cause us to get shingles from the vaccine. Is that correct information? Are there any other reasons? thanks-p
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11 years 8 months ago #39957 by Sandi
My fear is more along the lines of exacerbation of the autoimmune disorder or the triggering of another one that I may have a predisposition for.

See the following article:

A number of rheumatoid (Lupus&R.A.)and non rheumatoid autoimmune diseases have been reported to occur following immunization. Multiple sclerosis has been reported to become clinically apparent or be exacerbated following immunization with a variety of vaccines (MS). Myasthenia gravis has been reported to occur and to be exacerbated following immunization with a variety of vaccines (Biron et al., 1988); (Ryniewicz & Badurska, 1977). Guillain-Barre syndrome, an autoimmune demyelinating disease, has been reported to occur following immunization with the recombinant hepatitis B and tetanus vaccines (Herroelen et al., 1991); (Newton & Janati, 1987). Killed vaccines including the streptococcal vaccine have also been reported to induce and exacerbate autoimmune diseases to blood cells including platelets (Kelton, 1981) and red blood cells (Zupanska et al., 1976).

Vaccine induction and exacerbation of autoimmunity in rodents

Studies show that human vaccines can induce autoimmunity when administered with autoantigens, exacerbate autoimmunity when given alone, and can even induce autoimmunity when administered without autoantigens. Freund's complete adjuvant, which contains BCG vaccine (Paterson, 1973) or a similar mycobacterium in mineral oil, when mixed with autoantigens is one of the strongest inducers of autoimmunity known (Rose et al., 1971). BCG vaccine is also been shown to exacerbate autoimmunity in lupus prone mice (Engleman et al., 1981). The pertussis vaccine has been shown to be an adjuvant for a number of autoimmune diseases. The administration of the pertussis vaccine with thyroid extract in Freund's incomplete adjuvant caused the development of autoimmune thyroiditis in rats (Twarog et al., 1970). The addition of pertussis vaccine also exacerbated autoimmune thyroiditis induced in rats by the administration of thyroid extract in Freund's complete adjuvant (Twarog & Rose, 1969). Autoimmune nephritis (Rudofsky, 1976) and sialoadenitis (Whaley & Macsween, 1974) have been induced in guinea pigs with pertussis vaccine and tissue homogenates. Streptococcal vaccines have been shown to induce a number of autoimmune diseases in rabbits (Onica et al., 1977); (Colling et al., 1983); (Tonooka et al., 1978).

The pertussis as well as other vaccines have been shown to induce demyelinating autoimmune diseases in rodents. Administration of pertussis vaccine with homogenized spinal cord caused the induction of experimental allergic encephalitis, EAE, in rats (Levine & Wenk, 1967). Administration of the pertussis vaccine in the absence of autoantigens has been shown to exacerbate smoldering EAE in rats (Levine & Wenk, 1966). Administration of the swine flu vaccine in combination with an neural extract has lead to the development of autoimmune neuritis (Hjorth et al., 1984). Live attenuated vaccines including measles, rubella, BCG and distemper vaccines have been shown to exacerbate EAE induced by the administration of homologous spinal cord in Freund's complete adjuvant in guinea pigs (Caspary, 1977).


www.vaccines.net/autoimmu.htm
The following user(s) said Thank You: poseymint
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11 years 8 months ago #39963 by vaughanderek
Replied by vaughanderek on topic Shingles vacination, (Zoztramax ?? -- Worthwhile ?

poseymint wrote: Wondering what your doctors say- why shouldn't ITPers get live vaccines? I've read its because our immune systems might be suppressed from medications, and that might cause us to get shingles from the vaccine. Is that correct information? Are there any other reasons? thanks-p

I think that the argument goes that if you become immunosuppressed then you can become more susceptible to acquiring opportunistic ifnfections such as shingles which you can get more than once and as mentioned can be very nasty for many people. For those of us on high doses of immunosuppressants such as prednisone or Cellcept (MMF), etc. the chances of getting an infection increases and add to that a decrease in the efficiency of the immune system with age then chances of getting shingles with age increases. Those with ITP can get vaccinated with the live vaccine,those on drugs such as MMF should not( and the vaccine will probably not be very effective). Those with ITP should be no more at risk from getting shingles than the general population if they are not immunosupressed. I hope that is the correct explanation.
Sandi makes a very good point about acquiring potential nasty disorders from vaccinations themselves. My eldest daughter will not consider having our grandchildren vaccinated for this reason amd that applies to many other people in the UK . She does fear some of the really nasty potential side effects for her children. It can often come down to making a very personal choice based on risk and fear. Thanks Sandi for making that view known as I know you have suffered personally.
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11 years 8 months ago #39967 by Sandi
Vaugh:

I agree with everything that you said. Personally, that is how I feel. I do believe that I got shingles because I was on both Prednisone and CellCept and before that, Methotrexate. I also have chronically low lymphocytes.

However, whether or not to get vaccines is a personal choice and everyone has to make that decision for themselves. You have to weigh the benefit vs risk in your own situation. Having had ITP, I would not be afraid of a platelet drop due to a vaccine. That can be rectified (although not without cost). I am more afraid of serious, potentially fatal or debilitating side effects.
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11 years 8 months ago - 11 years 8 months ago #39974 by Ann
I wondered the same as Posey and the article cited by Sandi talks a lot about pertussis vaccine which is actually not a live vaccine so doesn't really help. I wouldn't withhold vaccines from children for this or almost any other reason but that's a whole 'nother discussion.

I think that those with ITP who aren't taking immunosuppressants are no different from the general public. The reason the immunocompromised avoid live vaccines is that the vaccine will likely cause them to get the disease itself, so the shingles vaccine user would end up with shingles.

Personally I have to avoid live vaccines because my immune system is naturally pooped and I too would almost certainly get the disease from the vaccine.
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11 years 7 months ago #40006 by Sandi
I was just pointing out what vaccines can do...any one of them. Just an example I pulled out the air.
11 years 7 months ago #40009 by
I received a tetanus booster back in 2002 due to hand meeting rusty wire - it was that injection that sent my platelets down the drain - we now feel it wasn't a straight tetanus booster but had other "stuff" in it.

I did not get the disease from the vaccine as is mention above that could happen - it sent my count down, low.

Someone else here also had a problem with a tetanus booster lowering her count - I believe hers did rebound where mine did not.

So my thought is we are to avoid live virus vaccines because they could drop ones count.

However like you Ann I now am supposed to avoid all vaccines thanks to a low IgG but I did get a flu show & will continue to do so unless it drops my count.

My children are grown - but I would still have them vaccinated if I had to do it over again, side effects of immunizations are probably not as bad as side effects of the diseases.
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11 years 7 months ago #40010 by Winnifred
I got the flu shot this year had counts over 300. Had a reaction to the shot had counts done and they had dropped in half. Was it the injection or me naturally dropping I can't say for sure. But it will be a very very long time before I trigger my immune system again!


My hematologist is new he has very little experience with autoimmune disorders. He had never heard of a vaccine triggering an immune response and dropping platelets.



I was stupid I should of said sorry not getting the flu shot. Has it made me immune who knows because I haven't been exposed to the flu and don't plan on exposing myself!
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11 years 7 months ago #40015 by Sandi
The problem these days is that there are SO many more vaccines given to children than there were in the 1980's when my kids were little. Some believe that the combination of having so many too close together is what is causing problems. I am so glad I do not have to make these decisions now and I feel bad for young parents who have to deal with it. My kids got chicken pox right when the vaccine came out. They were better off. Children who get the varicella vaccine must be re-vaccinated every 10 years to keep immunity. How many young adults will allow that to fall through the cracks? Chicken pox can be much more serious as an adult.

Below is a schedule of vaccines by decade.

Combination Vaccines

In the early 1950s, there were four vaccines: diphtheria, tetanus, pertussis and smallpox. Because three of these vaccines were combined into a single shot (DTP), children received five shots by the time they were 2 years old and not more than one shot at a single visit.

By the mid-1980s, there were seven vaccines: diphtheria, tetanus, pertussis, measles, mumps, rubella and polio. Because six of these vaccines were combined into two shots (DTP and MMR), and one, the polio vaccine, was given by mouth, children still received five shots by the time they were 2 years old and not more than one shot at a single visit.

Since the mid-1980s, many vaccines have been added to the schedule. Now, children could receive as many as 24 shots by 2 years of age and five shots in a single visit. The result is that the vaccine schedule has become much more complicated than it once was, and children are receiving far more shots than before (see Vaccine Safety for answers to the questions, Do vaccines weaken the immune system? and Do vaccines overwhelm the immune system?). However, help is on the way. Vaccines are again in the process of being combined in the same way that the DTaP and MMR vaccines are already combined. The following combinations of vaccines are now available:

Diphtheria, tetanus, and acellular pertussis
Diphtheria, tetanus, acellular pertussis, and inactivated polio
Diphtheria, tetanus, acellular pertussis, inactivated polio, and hepatitis B
Diphtheria, tetanus, acellular pertussis, inactivated polio, and Haemophilus influenzae type b
Measles, mumps, and rubella
Measles, mumps, rubella, and varicella
Haemophilus influenzae type b and hepatitis B
Haemophilus influenzae type b and meningococcus

Vaccines for Adolescents: A new generation of vaccines

Adolescents, like adults, were recommended to get tetanus boosters every 10 years; most requiring their first booster dose around age 11. Other than this, however, most adolescents did not require additional vaccines unless they missed one in childhood. By 2005, vaccines specifically recommended for adolescents were only recommended for sub-groups based on where they lived or medical conditions that they had. However, a new group of vaccines became available in the latter part of the decade. Vaccines for meningococcus and human papillomavirus (HPV) as well as expanded recommendations for influenza and pertussis now provide opportunities for adolescents to be protected as they enter their teenage years.


Vaccines for Adults: Increasing opportunities for health

Historically, vaccines were deemed to be “only for children.” However, vaccines for adults are becoming increasingly common and necessary. Most adults think only of the tetanus booster recommended every 10 years and even then, many adults only get the vaccine if they injure themselves. In 2006, the Tdap vaccine was licensed as an improved version of the typical tetanus booster, Td. The newer version also contains a component to protect against pertussis (whooping cough). All adults, especially those who are going to be around young infants, should get the Tdap vaccine. Adults often unwittingly pass pertussis to young infants for whom the disease can be fatal.

Influenza vaccines, available since the 1940s, are now recommended for most adults. Vaccines like MMR and chickenpox are recommended for adults who have not had the diseases, and vaccines including hepatitis A, hepatitis B, pneumococcus, and meningococcus are recommended for sub-groups of the adult population. The HPV vaccine became available in 2006 and a shingles vaccine was licensed in 2008. Both of these vaccines are specifically recommended for certain age groups within the population.

Unlike childhood vaccines, which are often required for entrance to schools, adult vaccines are not mandated. No requirements and a lack of preventive healthcare by most adults have led to low levels of vaccine use by adults.

The first formalized adult immunization schedule was published in 2002 and is updated annually.

www.chop.edu/service/vaccine-education-center/vaccine-schedule/history-of-vaccine-schedule.html
11 years 7 months ago #40018 by
I figure by walking into the grocery store I have been exposed - to everything and anything that is going around! What a germy place the grocery store is, yuck!

If my count dropped to 150k I'd be happy, but then it isn't high enough to drop to that :)
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11 years 7 months ago #40019 by Sandi
Melinda - it's funny you say that about the grocery store. Every time I walk in there and grab a cart, I suddenly feel stuffy and want to sneeze. Psychosomatic!
11 years 7 months ago - 11 years 7 months ago #40027 by
Have you listened to what is going on around you in the grocery store - coughing, wheezing, sneezing, hacking, gagging etc - and of course it is getting on the produce and getting on the packaging in the other areas.
(I'm sounding like a germaphobe aren't I?:))

Our stores have the antibacterial wipes to use on the cart before you grab it - one of these days they will have masks by
the carts ;)
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11 years 7 months ago #40076 by poseymint
I am psychosomatic when the TV commercials show someone miserably sneezing and coughing with a cold. I start to feel as though I'm catching it! its crazy but I feel better when I change the channel. When I'm in public places like the grocery I don't worry about germs.

I'm reading about vaccines and auto-immune disorders and wondering: why would a person get an auto-immune disorder from a vaccine which has a weakened virus, and then not get triggered by the actual disease? or maybe they do? In my case I've been having a 2 month rheumatoid arthritis flare from the flu vaccine, but have never had any lasting effects from having the flu.
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11 years 7 months ago #40081 by Sandi
I don't pretend to understand the exact science behind it, but anything that affects cells can trigger an immune response. Also, vaccines often have preservatives such as mercury that can damage the body.

The flu vaccine has been directly linked to Guillan Barre, an autoimmune disorder that causes full body paralysis. There have also been links between the Hep vaccine and Graves Disease. The MMR can also trigger ITP and that is shown in literature.

I think that in most cases that turn out to be chronic, a predisposition was present to begin with. Autoimmune disorders can be triggered by the actual disease. Many people are diagnosed after an illness. Sometimes they don't link the two though because they may not find out about the low platelets until months after they recovered. The same goes for the vaccines.
11 years 7 months ago - 11 years 7 months ago #40085 by
"The flu vaccine has been directly linked to Guillan Barre, an autoimmune disorder that causes full body paralysis. There have also been links between the Hep vaccine and Graves Disease. The MMR can also trigger ITP and that is shown in literature."

The flu itself has been directly linked to death.
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11 years 7 months ago #40091 by Sandi
I know Melinda. On this, we will never agree. :) As I said, it's an individual decision. I may eat my words someday, but for now, it's how I feel. My friend's father-in-law got Guillan Barre from a flu shot and was in the hospital for a year, most of the time on a respirator. He could think just fine, but couldn't communicate in any way. I heard all of the details the entire time and it scared me senseless. It was funny but I had him diagnosed two days before the hospital did. I had read a book about it a few years earlier.

My reactions to meds the past few years have made me very cautious of what I put in my body. I've trusted things too much in the past and ended up with problems. No more! I'm glad you feel safe getting the vaccine, I really am. I wish I were less fearful.
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11 years 7 months ago #40249 by Rob16
I just learned that my son-in-law will have one side of his face permanently paralyzed; he may have permanent hearing loss; and he will live the rest of his life with neuropathy... all because of what amounts to a flareup of shingles.

It is called herpes zoster oticus, or Ramsay Hunt Syndrome Type 2. It is the result of a reactivation of pre-existing herpes zoster virus in the geniculate ganglion, a nerve cell bundle, of the facial nerve. In his case, the vestibulocochlear nerve which is near to the geniculate ganglion is also affected.

Originally, they diagnosed it as Bells Palsy, and did not treat it early enough with antivirals to prevent nerve damage. The nerve function is not returning.

My daughter called me in tears, wanting to know what she could do to help him deal with this. I didn't have very good answers.

Yes, there are rare serious reactions to vaccines, but there are also rare serious reactions to the illnesses the vaccines are intended to prevent. Shingles can be a very serious disease. In his case, he is too young to have been a candidate for the vaccine, but it probably would have saved him from this outcome.
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11 years 7 months ago #40252 by Sandi
Good point. Sorry to hear that. Both sides of this quandary have been represented well. It is a hard decision.
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11 years 6 months ago #40681 by Lady Elly
My story is:

On March 17, 2010, I had a physical, my platelet count was 209,000. On April 1, 2010, I had the Shingles Vaccine (live virus). A few weeks later started having bruises and by May, I had over 20 bruises on my legs, hips, stomach. Went to my doctor, May 25, 2010, and my platelet count was only 6,000.

The next morning was sent to the Cancer Center. The hematologist said it was a live virus causing the major drop in platelet count. I told him I had the Shingles vaccine (live virus). A bone marrow biopsy was done. I was fine, except my immune system was destroying my platelets. I was diagnosed with I.T.P. Direct cause from the Shingles Vaccine.

The Cancer Center, hematologist filled out five pages and reported the shingles vaccine causing the I.T.P. My family doctor said it was the shingles vaccine that brought on the I.T.P. In April, 2011, I went to Mayo Clinic, and the hematologist said it was the Shingles Vaccine that caused the I.T.P. beyond a shadow of a doubt. He said that vaccines can cause many immune disorder.

Needless to say, I regret that I had the shingles vaccine.