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TOPIC: No way to sugar coat it: Shingles, ACK !

No way to sugar coat it: Shingles, ACK ! 1 year 1 month ago #64739

  • Hal9000
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I have compiled this summary of folks here on PDSA who have reported being affected by extreme pain, errr ahhh I mean, Shingles. On review of the data, I have to wonder if Shingles plays a bigger roll in ITP than is currently thought. For those that are row 3 or row 4 in my ITP treatments table, this one is for you.
Notes:
Shingles is also known as: Varicella Zoster virus (VZV), Chicken Pox, and Varicella
Old live vaccine: Zostavax, new 2017 non-live vaccine: Shingrix
The common prescribed treatment is Valtrex, aka Valaciclovir tablets. A 'natrual' treatment is L-Lysine and the avoidance of L-Arginine in one's diet
There is a lot of info here, probably has errors

Those who got Shingles, unreported count effect:
ashybobashy . , row 3, couple years after mmf remission
poseymint . . . ., row 1&2?, may have got shingles from flu shot 2010
Ann . . . . . . . . . , row 1&2, itp discovered when treated for shingles
tofer . . . . . . . . ., row 1?
GhostRider . . ., row 1?
mendenmh . . ., row 1?, enbrel trigger
Winnifred . . . . , row 1
dru . . . . . . . . . ., row 1
MelA . . . . . . . . , row 1?, aka Melinda, tetanus vaccine relapse
Dean . . . . . . . ., row 1, virus trigger
Matrixsmom(son Matrix) ., row 1?
TerriC14(daughter) . . . . ., row 1?
DebraK . . . . . . ., row ?
maryspott . . . . ., row ?

Those that got Shingles from steroids:
sandi . . . . . . . . ., row 1, pred & mmf
MommaBear . . , row 1
hottoddy . . . . . ., row 1
karatemom3(son Matt) . , row 1
johnmerrick . . . , row 1?

Those that got Shingles from Rituxan:
Kellyabe . . . . , row 2, also remission via Rituxan
phyllis2155 . ., row 1
tigereyes . . . ., row 1?

Those whose counts crashed by Shingles:
None reported

Those that got Shingles while on MMF (only)
vaughanderek . , row 3

Those with ITP triggered by Shingles or its vaccine:
Inascanlon . , row 3
Lady Elly . . ., row 3
rjsmyth . . . . , row 4
Lvcast1 . . . ., row ?, counts went up with ivig, only 1 post

Those with ITP triggered by Chickenpox or its vaccine
PaisleyRain(daughter Paisley) . , row ?, vaccine trigger
jojo(daughter) . . . . . . . . . . . . . . , row ?, good ivig resp, chickenpox trigger
jojo(friend) . . . . . . . . . . . . . . . . ., row ?, poor ivig resp, chickenpox trigger

I notice the following things about the above groups:
- Chickenpox and Shingles is a trigger/cause of row 3 or row 4 ITP
- those that have row 3 ITP do NOT get Shingles
- those that have row 3 ITP and are being treated by a row 3 drug can get Shingles
- those that are in remission to row 3 ITP can get Shingles
- those that are row 1 often get Shingles
- those that are row 1 often get Shingles while being treated with steroids or Rituxan

And then there is this post by 'jojo'. Taken together with the above data, this post by jojo is perhaps the single most important post I've ever read on PDSA.
pdsa.org/discussion-group/search.html?searchuser=jojo&exactname=1&searchdate=all&order=dec&childforums=1

The story goes like this. Jojo's daughter developed ITP apparently from classmate who had Chickenpox. Her response to IVIG was good/strong. From the above PDSA member data, her daughter having row 3 would be consistent. Then a week later, another classmate friend developed ITP too! This second instance reinforces the direct association between Chickenpox and ITP. But the case of the friend was different. The friend: 'is not responding well to the IvIg'. Oh my, that describes row 4 very well. One kid got row 3 ITP and another got row 4 ITP from classmates with Chickenpox.

So taking all this information together, Chickenpox and Shingles can trigger either row 3 or row 4 ITP. This common trigger helps to explain why row 3 and row 4 are often found together - as noted in the 4 ITP antibodies study.

Food for thought.
Does Shingles successfully hiding in nerve cells have something to do with Thrombopoietin (TPO)?
Is row 3/4 ITP secondary to Shingles?
If Shingles could be eradicated from the body, could row 3/4 ITP self resolve?

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No way to sugar coat it: Shingles, ACK ! 1 year 1 month ago #64744

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Hal, you are amazing with your charts and details.
I did not get shingles from steroids, I had not taken prednisone for more than a year when I got them. There was a case of chicken pox in a student in the daycare located near my classroom in the school where I worked. But I thought that you cannot get shingles from chicken pox? My blood counts were not affected by shingles luckily.
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No way to sugar coat it: Shingles, ACK ! 1 year 1 month ago #64745

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Hal I did not get shingles because of ITP - my 1st case was well before ITP and was caused by stress due to a neighbor from HELL [this woman had to have horns hidden by her hair]!! 2nd case was because of ITP but not due to ITP - my count had hit the gutter because of a tetanus booster and I was so darn stressed out I'd have to go on prednisone again and look like the Pillsbury Dough Boy for our son's wedding [did refuse pred and had one WinRho IV]. Both my cases of shingles were due to stress. Also I am Melinda on your chart who had shingles & the tetanus booster relapse - I left this group for a while & when I decided to come back it wouldn't let me have Melinda so I'm now MelA. Sorry I have not read your chart/s - from what I'm seeing it may make my head spin trying to figure it out ;)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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No way to sugar coat it: Shingles, ACK ! 1 year 1 month ago #64757

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dru wrote: Hal, you are amazing with your charts and details.
I did not get shingles from steroids, I had not taken prednisone for more than a year when I got them. There was a case of chicken pox in a student in the daycare located near my classroom in the school where I worked. But I thought that you cannot get shingles from chicken pox? My blood counts were not affected by shingles luckily.

Dru, thanks for the correction on steroids. Yes, AFAIK row 1 can get Shingles from someone with Chickenpox. But for row 3, there is no evidence of them breaking out with Shingles - with active ITP. On the charts and details, this post was hard to explain. The result is bit odd and is only superficially beneficial. Hopefully the next little study will be more useful.

MelA wrote: Hal I did not get shingles because of ITP - my 1st case was well before ITP and was caused by stress due to a neighbor from HELL [this woman had to have horns hidden by her hair]!! 2nd case was because of ITP but not due to ITP - my count had hit the gutter because of a tetanus booster and I was so darn stressed out I'd have to go on prednisone again and look like the Pillsbury Dough Boy for our son's wedding [did refuse pred and had one WinRho IV]. Both my cases of shingles were due to stress. Also I am Melinda on your chart who had shingles & the tetanus booster relapse - I left this group for a while & when I decided to come back it wouldn't let me have Melinda so I'm now MelA. Sorry I have not read your chart/s - from what I'm seeing it may make my head spin trying to figure it out

Melinda, thanks for your alias correction. I've got you in group 'Those who got Shingles'. There isn't any group who got Shingles from ITP. There is a group though that got ITP from Shingles - and they had either a row 3 or row 4 response. Sorry, it's confusing. On the stress aspect. Yes, I've been reading that both stress AND back injuries seem to often cause a Shingles breakout. They say that Chiropractors are well versed in recognizing a patient with Shingles and prescribing drugs for it. I can only speculate that the Shingles virus doesn't like to live in excited, or under stress, nerves.

Isn't it odd that many people report that STRESS is reported to cause Shingles, AND, STRESS is reported as a cause for ITP. Ha, maybe it is not odd at all !

No comment from Sandi ? ?
Sandi, I'm stuck. Any comments on my 'food for thought' comments? Or, anything else?

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No way to sugar coat it: Shingles, ACK ! 1 year 6 days ago #65123

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Hal,
I was just diagnosed with Shingles on Friday. I had my 4th infusion of Rituximab on Monday, and broke out in the rash on Thursday. I think the Rituximab lowered my immunity to the virus. My platelets were 247K the day of my infusion, so they were fine. I’m taking acyclovir 800mg and a methylpredisolone 4mg dose pack. I’m much better today.
I think I’m a row 1 on your list because I respond to steroids. I had some problems with Promacta with counts going low.
What are your thoughts ?
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No way to sugar coat it: Shingles, ACK ! 1 year 5 days ago #65125

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Thanks for posting julane. ACK, Shingles !
How did it start? Was it like a burning skin sensation, with nothing visible, at first? I bet you are glad you went to the doctor right away. Yes, with a 247 count, sounds like you had a nice quick response to Rituxan. I wonder if those that respond slower have a more extensive T cell involvement.

I've read one theory that ITP can come back (months/years) afterwards because not all targeted B cells being wiped out. That some, deep in the bone, survive. Don't know. But, after learning about the different Herpes viruses, I wonder about another possibility. That EBV (HHV4) is able to turn off B cell activation and extend cell life. The cell and the virus become dormant. When/if EBV reactivates, then ITP can resurface.

I've read about some doctors prescribing steroids with Acyclovir in bad Shingles cases. But, haven't heard an explanation why. Steroid seems a bit counter intuitive to me. Did the doctor happen to explain why? Something beyond: it would heal faster?

Is the Acyclovir a 7 or 8 day supply? Just off hand, I wonder if it is a good idea to stay on that stuff as long as possible. Possibly help with reducing EBV (and Shingles) as much as possible? Don't know, maybe it does't work as well with EBV as it does with Shingles ?

If you haven't seen this before, this may help from a diet perspective. Yogurt is good.
www.herpes-coldsores.com/lysine-food-chart.htm

Get well soon!

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No way to sugar coat it: Shingles, ACK ! 1 year 5 days ago #65127

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On uptodate.com
With regards to glucocorticoids, early trials suggested a modest benefit of glucocorticoids on a limited number of clinical outcomes Thus, these agents were often used in combination with acyclovir for the treatment of uncomplicated acute herpes zoster in an attempt to improve quality of life and time to healing of lesions, and to reduce PHN. However, a subsequent meta-analysis of five placebo-controlled trials evaluating acyclovir alone compared with acyclovir plus glucocorticoids did not demonstrate any benefit of combination therapy on quality of life or the incidence of PHN [20]. Furthermore, corticosteroids could potentially increase the risk of secondary bacterial skin infection.
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No way to sugar coat it: Shingles, ACK ! 1 year 5 days ago #65136

  • Sandi
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Okay Hal, my input.

1. I'm concerned about Dru getting shingles from someone with chicken pox because that's been my concern when my grandson gets his vaccine. Everything I've read states that it's the other way around....you can get chicken pox from someone with shingles. I know that nobody cares about this, but they give the varicella vaccine at 12 months. I need to tell my DIL to please have his first birthday party before the vaccine so I can stay away for a month. It will kill me not to see that baby. Even with my fancy schmancy Lysine, I'm afraid to risk it.

2. Stress can trigger any illness. It's known to cause heart attacks and strokes, but it also causes an inflammatory response in the body that can trigger anything.

3. I can understand giving steroids with shingles due to its anti-inflammatory abilities. I got a higher dose of them too when I had shingles because the nerve inflammation hit the muscle and I couldn't use my hand for months. Loss of the use of my hand was the first symptom. I thought it happened because I'd been using an orbital sander to sand my deck. I thought I irritated the nerve that way and didn't really think a thing of it. I just kept sanding with the other hand for two days and then the tingling started.

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No way to sugar coat it: Shingles, ACK ! 1 year 5 days ago #65139

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Thanks for all the information.
Mine started with a rash that was hot to the touch and a few hours later itching. The “rash” was straight across my shoulder with some spots on my neck. Those dried up, or became less bothersome within a day of the acyclovir. I now have a place on my upper arm that burns and itches intensely with heat in it.
The steroids are to help with nerve inflammation was what I was told by my doctor.
The acyclovir is a 7 day supply. I don’t know why only 7 days but maybe after then it’s done all that it can. It won’t get rid of shingles only hopefully make them go away quicker and not be so bad.
Hal, is EBV part of ITP..or shingles ? If so, I haven’t heard of that yet. I’ll do research. I was dx with ITP October 2017 with no other illnesses. My lowest platelet count has been 2K and my highest on steroids with Promacta 75mg was 763K.

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No way to sugar coat it: Shingles, ACK ! 1 year 4 days ago #65140

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And I had no prednisone with either case of shingles - 1st time when it was at my waist I was given a cream for it - 2nd time pills but can't recall the name. Since a friend had shingles & didn't get to the doctor until a week or 2 after the outbreak he was a mess, and that is an understatement, and couldn't be given the medication but was put on steroids and it took forever for it to clear up and for the pain to subside.

There are 6 of us in my clogging dance class - 3 of us have had shingles, 1 came down with it bad last year [she still has pain] and another came down with it 3 weeks ago. Taking this group of 6 the odds aren't good - out of 6 of us 5 have had it!!

And Sandi, your #2 is exactly why I got shingles both times - stress!!

My thought on shingles - if in doubt get in to the doctor FAST, it is better to be safe than sorry since there is a short window for starting the medication!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 1 year 4 days ago #65142

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I don't remember stress when I got shingles, but I've had plenty of it since in the past three years. In my case, the tingling started two days after I lost the use of my hand. It was on the inside of my upper arm and I couldn't really see it. That night I took a look at it in the mirror and saw the blisters. It was midnight but I went straight to the ER. I went in and told them I had shingles, the Dr. said "Yep" and handed me a script. I was out of there in less than an hour. Fastest ER visit ever.

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No way to sugar coat it: Shingles, ACK ! 1 year 1 day ago #65150

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So my clogging buddy who got shingles last year - in class yesterday she said it had been 18 months since her diagnosis, she is still in pain. My other clogging buddy [she is also my next door neighbor] who came down with it just over 3 weeks ago, is having a heck of a time and she got in to the doctor and started on med the day after the "rash" showed up.

Not good - honestly if my immunologist hadn't told me not to get it yet I would get the Shingrix injections now [in spite of having had shingles 2x] - shingles and the pain that can/may linger forever [it did with my husband's uncle, he had it for years until he died] just is hell, period!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 1 year 8 hours ago #65154

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Have your buddies had the vaccine? I hope they get better soon.

I know you don't want shingles again, but PLEASE wait until there is more information about this vaccine. There is no post-marketing data gathered yet, which means that the general population that is getting it now are the guinea pigs. You might be able to still get the old vaccine (Zostavax) if you feel you must, but that one has a class action lawsuit against it for causing shingles.

This is in the insert: " The study excluded, among others, subjects who were immunocompromised, had a history of previous
HZ, were vaccinated against varicella or HZ, and patients whose survival was not expected to be at least 4years or with conditions that might interfere with study evaluations. Subjects were followed for the development of HZ and postherpetic neuralgia (PHN)
for a median of 3.1years (range: 0 to 3.7years).

www.gsksource.com/pharma/content/dam/GlaxoSmithKline/US/en/Prescribing_Information/Shingrix/pdf/SHINGRIX.PDF

Here are some reviews which is all we have right now.

"Wasn’t told about side effects. Like many other’s did not know until 2nd shot had baseball rash and fever for 2 days. Had inflammation of lymph nodes. Had serious side effects that reactivated internal shingles. This vaccine was not tested on individuals who have HAD shingles look it up.. Anyone that is considering this vaccine do your research."

"I had had the previous zostavax with no issues. I got the first Shingrix shot about five months ago and have determined I am NOT going to get the second shot. I am 66 years old and in good health. I was fine for the first day after the shot but quickly got a fever and flu symptoms, dizzy, body aches etc. everything everyone else has described. Also my arm was very sore. The flu symptoms and fever lasted about two or three days. My arm was fine after five days. However I have lasting and annoying nerve pain in both arms, worse in the arm where I got the shot. My arms are aching and feel weak as others have described. I know shingles is very painful but in my opinion there is more to be learned about this vaccine. I hope I get better."

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

I know you have faith in vaccines but they are getting bolder with much more inflammatory adjuvants. They are using new ones that have never been used before. Shingrix came out right around the time of the new Hep B and even though things did not go well in the trials, they approved it anyway. 14 people died of heart attacks.

This is a clip from the actual approval vote. Very disturbing.

www.youtube.com/watch?v=L_JJMpe00mM&t=89s

This was written by a doctor (cardiologist) on the approval committee:

"To know if the 7 -1 heart attack imbalance represented a real risk, we’d need comparative data in 50,000 people. The fastest way of obtaining that evidence would be through a post-marketing trial. But a post-marketing trial would be possible only if the vaccine was approved for public use."

www.statnews.com/2017/08/04/dynavax-hepatitis-vaccine/

I've been looking for more info on Shingrix but can't find much.

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No way to sugar coat it: Shingles, ACK ! 11 months 4 weeks ago #65168

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No Sandi, neither had been vaccinated against shingles. You are sweet - thanks for your concern and I won't be getting it until my immunologist says it is ok. He said not enough data on those with compromised immune systems so I will listen to him, I have enough problems right now. I am trying not to stress, but who knows what tomorrow will bring.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65195

  • Sandi
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I found this article last night. I registered to get it, but I'll copy and paste for you guys in case you don't want to.

" The efficacy and safety of the new zoster vaccine Shingrix has not been established among patients with autoimmune diseases, researchers reported here.
Clinical trials of the vaccine in adults ages ≥50 in the ZOE-50 trial, and ages ≥70 in the ZOE-70 trial showed very strong efficacy -- about 97%, compared with 40% to 50% for the older Zostavax vaccine. In the ZOE-50 study, 15,000 adults were randomized to the vaccine or placebo and followed for slightly over 3 years. During that time, there were six cases of shingles in the active treatment group compared with 210 cases in the placebo group. In ZOE-70, which included 14,000 participants, there were 23 cases of shingles in this high-risk age group who received the active vaccine compared with 223 who were given placebo. Both studies were published in the New England Journal of Medicine and the vaccine was approved for use in the United States in October 2017.
"This is a really, really good vaccine," said Elizabeth Kirchner, MSN, CNP, from the Cleveland Clinic at the Ohio Association of Rheumatology (OAR) annual meeting. "But the problem is that patients with immune-mediated inflammatory diseases such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and lupus were all excluded from those trials," she said.
Of particular concern is the adjuvant that was used in Shingrix, which has not been used before in humans.
"Adjuvants help the vaccine work. It's been known even since the smallpox vaccine was used that if you added an irritant, a little lye or soap, it worked better. For about 100 years the only adjuvant we had was alum, but now we have several more," Kirchner said.
The adjuvant used in Shingrix is an extract of the Quillaja saponaria tree native to Chile, which is a totally novel adjuvant that is unlike any previously used in vaccines, said Kevin Winthrop, MD, of the Oregon Health and Science University in Portland. "The efficacy of this vaccine is off the charts. No one has ever seen efficacy like this, and it's probably because of the adjuvant," he said at OAR.
The adjuvant is associated with significant reactogenicity, however, with up to 15% to 16% of patients having grade 3 systemic adverse events such as fever, myalgias, and flu-like symptoms that typically last for 2 days. "The worry is that this is going to cause flares in patients with lupus," he said.
"We know that adjuvants kick up the immune system, get the innate immune system going. But I'm not so excited about kicking up the immune system in a patient with lupus and not knowing what it's going to do to that patient's disease," Kirchner said.
This vaccine has been studied in HIV patients, cancer patients, and transplantation patients, and the patients did fine, she said. "But our concern is kicking up the immune system in autoimmune patients who already have a overactive immune system," she said.
Shingrix was given preference over the previous vaccine Zostavax by the FDA, but the vote among the Advisory Committee on Immunization Practices was only 8 to 7 in favor, Winthrop said. "This was hotly debated. One reason was a lot of people had concerns about the adjuvant. They were worried that if you give a preferential recommendation, physicians will start using it in subpopulations [such as autoimmune patients]," he said.
"There also have been concerns about creating autoimmune diseases over the long term. In the ZOE trials, patients were only followed for a few years," he said. Careful post-marketing surveillance will be needed to ensure safety, he concluded."

www.medpagetoday.com/meetingcoverage/oar/74765

I had a very bad feeling about this vaccine, especially for me since I already have Lupus. But this is what I've been trying to tell all of you. The efficacy of several current vaccines is low (like with Zostavax), and while trying to improve efficacy, they are using much stronger adjuvants to stimulate the immune system. This causes an extreme inflammatory reaction in some people. This new adjuvant was always considered to be a highly toxic agent. While they are trying to improve efficacy, they are seriously compromising safety. They are getting pretty cocky with these new adjuvants. I wouldn't think it's safe to assume that if you don't have an autoimmune disorder that this vaccine is safe for you. Anything can trigger one, especially something that causes an inflammatory response in a predisposed individual. As I've mentioned before, 14 people died in the clinical trial for the new Hep B vaccine as opposed to 1 in the control group (which used the old Hep B as the 'placebo', by the way). They approved it anyway and will rely on post-marketing experience for two years to see if death or autoimmune disorders are a problem.

****I need to check and see if Zostavax was used in the control group as the 'placebo' which is often the case. Zostavax is known to cause shingles which would make that '210 people with shingles in clinical trial' a fraudulent number.

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65196

  • Sandi
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This is a follow-up article to the Medpagetoday. I know it's not mainstream so it loses credibility, but it basically states the same thing that the above article does and injects a little common sense.

"Shingrix may be the biggest mass experiment on everyone over 50 to date.
Since it was first brought to market last October, it’s been selling like ice-cold lemonade in the middle of the Sahara.
In fact, so many older folks have been convinced to take the jab that pharmacies are reporting shortages, and news outlets are trying to help their audiences track down where to get it if they haven’t already.
Of course, ever since the get-go of this shingles vaccine, we here at eAlert have been warning you to stop, look, and listen before rolling up your sleeve.
But it’s only now that this blockbuster has hit the market big time… and everyone over 50 is being bullied into getting two doses of it… that some doctors are starting to question its safety.
Great timing, right?
However, the safety of Shingrix shouldn’t just be called into question – because we know for sure how dangerous it can be thanks to one cat that’s been let out of the bag.
As it turns out, it could possibly reactivate an autoimmune disease out of remission or spur the onset of a new one, even if you’re an otherwise healthy senior.
I’m talking about such debilitating and painful diseases as RA, psoriatic arthritis, ankylosing spondylitis (a.k.a. arthritis of the spine), and lupus.
No one wants to experience the pain and itching of shingles. But for anyone who has suffered the agony of RA stiffness and joint swelling, the fatigue, unexplained fevers, and rashes that come along with lupus, or the chronic diarrhea and tissue damage of IBD, you know that there can be conditions even worse than shingles.
Of course, you won’t hear a thing about that from the mainstream.
Instead, it looks like GlaxoSmithKline decided to spend its time covering that little detail up by excluding patients with any of these immune diseases from the drug’s trials!
And now, it’s busy peddling a vaccine that contains a chemical that has never been used in human beings… one that is known to be so potent in its toxicity that only a couple of years ago, scientists at the National Institutes of Health were convinced that it wouldn’t ever be used in people!
So, does this mean that Big Pharma has figured out a way to make it less toxic?
Judging by the way Shingrix causes more side effects — such as fever, muscle pain, and flu symptoms — than any other vaccine given to adults, I think not.
However you want to look at it, Shingrix is bad news… and not an experiment you want to be opting into.
Fortunately, there’s an easy way to steer clear of a shingles attack – no drugs required! Just follow the advice of HSI panel member Dr. Allan Spreen and take a daily dose of 500 mcg of vitamin B12, which is a powerful way to protect your nervous system.
And should you come down with shingles, taking a shot of B12 is the very best way to alleviate the symptoms and shorten the duration of an attack.
“Questions remain about Shingrix safety in rheumatic disease” Nancy Walsh, August 26, 2018, Medpage Today, medpagetoday.com"

hsionline.com/2018/09/07/dangerous-shingles-shot/?fbclid=IwAR2xzbDv1CWLwQu-gbikuDYH1Avi2PIX3lgkQiVwUgjMJ53P7MmomRj5q_I

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65203

  • Hal9000
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Sandi wrote: ... "But the problem is that patients with immune-mediated inflammatory diseases such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and lupus were all excluded from those trials," she said...

What I do not understand is why there wasn't a sharp increase in instances of people with these conditions in the trial. There is no way for the manufacturer to know who is and who is not predisposed to these conditions - then exclude from the trial those who are.
Similarly, we read on the earlier Consumer Reports web page of someone having Serum Sickness from first Shingrix shot. Why no Serum Sickness adverse events in the trial?

****I need to check and see if Zostavax was used in the control group as the 'placebo' which is often the case. Zostavax is known to cause shingles which would make that '210 people with shingles in clinical trial' a fraudulent number.

My recollection is no, it was not compared to Zostavax.

Sandi wrote: This is a follow-up article to the Medpagetoday... Fortunately, there’s an easy way to steer clear of a shingles attack – no drugs required! Just follow the advice of HSI panel member Dr. Allan Spreen and take a daily dose of 500 mcg of vitamin B12, which is a powerful way to protect your nervous system.
And should you come down with shingles, taking a shot of B12 is the very best way to alleviate the symptoms and shorten the duration of an attack...

Ah, need to do my homework better. Looks like both C and B12 are very good at speeding recovery - besides leveraging Lysine for prevention. That 500 microgram recommendation is A LOT. Need to order some of that.

Sandi, I've been meaning to ask you. One would think that being on non trivial amounts of Pred, Shingles would be a recurring problem. But you've only had it when taking both Pred and MMF, right? What would you attribute avoiding Shingles? Taking a lot of vitamin C and D? Or, following an autoimmune diet that doesn't include nuts - which is high in Arginine?

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65204

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Sandi wrote: I found this article last night. ...

" The efficacy and safety of the new zoster vaccine Shingrix has not been established among patients with autoimmune diseases, researchers reported here.


And that is basically what my immunologist told me if you recall what I posted in the other shingles/Shingrix thread:
"However, while Shingrix is not contraindicated in immunocompromised persons, it is not recommended at this time. ... "
And that is exactly why I will listen to him and not get the vaccine yet. But I tell you I fear getting shingles again. So far those
I know who have had the old or the new vaccine have had no trouble with it.

I take B12, I take Ester C - I just don't feel those can be relied on to ward off shingles or that a shot of B12 will ease recovery should I get it. Seriously
if you haven't had it or don't know someone who has or don't know someone who lived for many years with severe pain thanks to shingles
it is very easy to downplay it. Personally I don't feel there is any way to avoid shingles - I would have had to have avoided letting my next door neighbor from HELL get to me and cause me all that anxiety/stress thanks to her trying to run my 16 year old son off the road in our neighborhood a couple times & letting her son yell obscenities at us from his back bedroom window when we were in our back yard and I won't go into what else this self-proclaimed "good Christian woman" did.

Not to mention if you don't recognize that it is shingles that you have and get into the doctor right away [or the ED as Sandi did] you can be in big trouble. However my neighbor saw the doctor the next day after the blisters appeared and it is now at least a month later and she is not doing well at all.

Hal have you had shingles?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65212

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Hal:

I haven't been able to find as much information about Shingrix as I have for the new Hep B. I haven't had a lot of time to really look lately. But....in the new Hep B trial, there was an increase in autoimmune disorders (as well as heart attacks) noted; they approved it anyway with the notation to watch the 'two year post-marketing experience'. That one also used a new adjuvant. It is quite common in vaccine trials to use another vaccine or an adjuvant as the placebo and in fact, they now call it a 'comparitor'. I've seen it time and time again and have a great article by the British Medical Journal which scrutinizes this practice. I did try to look up the Shingrix clinical trial and came up with too many results to weed through them all. I moved last March and am still trying to get settled in. I'm bumping it up for the holidays because my daughter and her boyfriend will be staying with me.

I don't remember if I was taking any immunosuppressants other than Prednisone when I had shingles. I also don't know why I got them then or why I haven't had them since. When I got them the last time, I blamed my daughter's dog. He'd jumped on me a few days earlier and poked a nice hole in the arm that ended up with shingles. That was the only thing that was different and I guess I chalked it up to trauma to the skin or dirty dog nails. Who knows?

Melinda:

I'm glad you're listening to your doctor and I'm glad that he is being cautious. I worry about you; you've been my friend for probably close to 20 years now. I know we butt heads (always did) but that doesn't make me care any less about you. The fact that you already have neuropathy is a concerning factor here. A few of the reviews of Shingrix mentioned that if a person had shingles before, this new vaccine irritated the PHN that they already had. Using an inflammatory substance in a body that already has inflammation is like poking a fire with a stick.

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65222

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Sandi you and I will always have a love/hate relationship :) Yes, I do consider you my friend.

Just found out what caused an acquaintance to lose hearing in one ear, have face paralysis, have "spinning" feeling constantly, and more - herpes zoster, shingles! The blisters were inside her ear!! It has been at least 4-5 months now and she still can't walk right because of the spinning feeling, can't hear out of that ear, having to go to PT to help with walking properly etc due to the "spinning", did get her face muscles back to normal however. She said she can't go through this hell again and will get the shingles vaccine as soon as she is allowed.
www.mayoclinic.org/diseases-conditions/ramsay-hunt-syndrome/symptoms-causes/syc-20351783
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65227

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Hi Melinda.
Don't know if you're familiar with my latest situation. I took Rituxan last spring and besides serum sickness, was left with vestibular neuritis that I'm still not over. I have that constant "swimmy" feeling in my head that a round of PT didn't help much at all. I can empathize with your friend about how terrible it feels.
But... I'm now enrolled in a course of "advanced vestibular training" that's helping very much. I have hope for the first time that my life can get back to normal, or very near it, once I've finished all 12 sessions.
I have a strong feeling that your friend could be helped by the program. Problem is, there are currently just two places in the US that offer it. One is in Newport Beach, CA and the other in St. Louis that just opened last month. I feel so fortunate that I live where it's available and that Medicare is paying the bill.

If you think your friend would be able to travel to either place, I can pass on more details.
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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65231

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Janet thank you, that is very kind of you! I will let her know about the "advanced vestibular training" - I do not think it would be possible for her to go to Newport Beach or St. Louis however, and she isn't on Medicare. But maybe she can discuss this with her physical therapist. If she would like more information I'll let you know.

Hope this will help your vestibular neuritis, that has got to be horrible! Would the Rituxan have caused that?

You wouldn't happen to be in St. Louis would you - I grew up there :)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 11 months 3 weeks ago #65238

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Melinda,
I've never had Shingles. But, I think I've come close. I had an intense burning sensation, maybe a year or so ago, on my inner forearm that lasted exactly one day. No blisters, no red spots, nothing unusual on the skin at all. Just an intense burning that came on quickly for no reason, and went just as quickly for no reason. In retrospect, I suspect it was Shingles and my immune system fought it off.
Based on revelations I describe in my first posting on this thread, I suspect I will be able to get full fledged Shingles while taking the drug I'm on - Danazol. So, I am very concerned with not getting Shingles. I also don't want to take the Shingrix shot because I believe Chickenpox, when I was a kid, triggered my ITP.

Sandi,
take a look at my earlier post here:
pdsa.org/discussion-group/6-general-itp-discussion/30152-shingrix-vaccine-for-shingles.html#64376
Look for the link to the "FDA Briefing Document SHINGRIX". I think any and all data about Shingrix is in that document.
When you had Shingles, do you happen to remember taking a lot of Vitamin C and D back then, as you do now?

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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65248

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Sorry Hal, I don't buy that for 1 day you came close to having shingles - if you did I'd like to have had it that way too!

I'm not Sandi but the 2 times I had shingles I was taking a lot of vitamin C - my D was ok so there was no reason
to be taking a lot of it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65254

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Melinda, did you know that some folks get Shingles but have no symptom other than pain? No rash, no blisters, just pain.

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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65255

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Hal, did you know that zoster sine herpete is not common, hard to diagnose, and lasts as long as shingles with the blisters. Treatment is the same.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65258

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Does anyone know how much lysine supplement to take if you get shingles? I would like to have it here just in case I do get shingles again.
Off topic but I took my cat to the vet for runny eyes and the vet said this is often a type of herpes infection in cats-she gave us a lysine supplement for cats-

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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65263

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Dru:

"The typical recommended intake of L-lysine is 1 gram per day, but a therapeutic dosage is usually 3 grams daily taken in three separate doses. To reduce herpes symptoms, you could take up to 9 grams per day of L-lysine. Any dosage above these recommendations could cause overdose-like side effects."

That's interesting about your cat!

Hal:
I was probably taking Vitamin D when I had shingles, but not Vitamin C.
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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65288

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Hal, please forgive me for the hijack. I just want to answer Mel's questions and then I'm outta here.

MelA wrote: Hope this will help your vestibular neuritis, that has got to be horrible! Would the Rituxan have caused that?
You wouldn't happen to be in St. Louis would you - I grew up there :)

The AVT is definitely working. I'm halfway through the course. If it doesn't improve my vertigo any more than it has, I'd actually be satisfied. But I have high hopes there's more improvement ahead.
A neurologist and an audiologist have told me Rituxan isn't likely to blame, but I believe it had a sidewise effect. I found circumstantial evidence of it in a professional article about a woman with RA who took a biologic (unnamed in the abstract) for it. Twice, her treatment was followed by bouts of VN, thought to be caused be a reactivation of the latent virus that causes it. I really believe that's what happened to me.

Yes, I'm in St. Louis. I remember you and I talking a while ago about the Cardinals and the Rockies, just after Holliday was traded here. I'm still a Cards fan, but they aren't the same team they were then. ;)

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No way to sugar coat it: Shingles, ACK ! 11 months 2 weeks ago #65291

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I'm glad you're doing a bit better, Janet! Good to hear!
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