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Sjogrens Topics => Living With Sjogren's => Topic started by: Skylar on March 12, 2019, 06:18:33 AM

Title: Shingles vaccine?
Post by: Skylar on March 12, 2019, 06:18:33 AM
I had the Zostavax vaccine when it came out but my PCP wants me to get the Shingrix. This new vaccine is more effective but it also contains QS-21 Stimulon which is an ?immune potent? adjuvant designed to stimulate the immune response. This QS-21 makes me hesitant about getting it. I?m currently not on any medications except thyroid. I would hate to have a bad flare that requires medication. On the other hand I don?t want shingles.

Have you had Shingrix vaccine and did you have any side effects?  Did you consider the implications of he immune potent adjuvant?
Title: Re: Shingles vaccine?
Post by: Carolina on March 12, 2019, 03:13:45 PM
Dear Skylar,

My Duke Research Immunologist told me to get the Shingrix Vaccine.  I had both doses last Spring/Summer with absolutely no side effects.  However, I'm a sample size of one, so not very useful for making a decision.

I researched the literature using "Shingrix side effects pubmed" as my search term.

While most reports seem to indicate success in the majority of cases, there are some reports indicating that caution should be exercised for some patients.

Even the report that found some unpleasant side effects and even very rare deaths following immunization, stated that the incidence of problems is consistent with problems reported for any medication administered to a very large number of people.

Of course, If YOU are the one in a million with a problem, then that problem is unacceptable to you.

I think you are wise to think this through carefully, Skylar. 

Here are two of the reports I found.

https://www.cdc.gov/mmwr/volumes/68/wr/mm6804a4.htm

https://www.ncbi.nlm.nih.gov/pubmed/29457489

Regards, Elaine

Title: Re: Shingles vaccine?
Post by: Skylar on March 12, 2019, 03:43:18 PM
Thanks Elaine  I?m going to read those two reports.

Title: Re: Shingles vaccine?
Post by: Carolina on March 12, 2019, 06:08:36 PM
BTW, I had the earlier live vaccine in 2007 before we went to China.

Once I was identified in 2012 as having Immune Deficiency, my Immunologist was horrified that I had risked the vaccine.  Of course, I didn't know I had CVID.

I AM terrified of having shingles, so I will do anything to reduce that possibility.

I have seen shingles so disable an elderly woman that  I'm sure it hastened her death. AND the pain never went away.  The pain can last more than 5 years, I guess.

Regards, Elaine
Title: Re: Shingles vaccine?
Post by: Skylar on March 12, 2019, 07:00:15 PM
Elaine, I had the the Zostavax vaccine at the insistence of my rheumatologist.

I had done a search and read older posts on shingles and read what you wrote about that poor woman. I am leaning towards having the Shingrix especially since the Zostavax if it works, may only protect for 5 years and it's been close to 5 years since I got it. While I'm scared of having a reaction from the vaccine, I'm more concerned about the potential for shingles.

Title: Re: Shingles vaccine?
Post by: Carebear on March 12, 2019, 09:03:40 PM
Hi Skylar,

My doctor recommended I begin the Shingrix shots last summer.  My experience should not deter you because I was told by the pharmacist that my reaction was relatively uncommon.

Both shots made my arm swell up,  and it was very painful and red for a month.   I had severe flu-like symptoms during that time as well.  It took all my strength to get the second shot, but I knew I had to. 

Like Elaine,  I am terrified to get shingles.  I have had two close members of my family who had it.  Each suffered for years, and treatment was ineffective.  So my experience with the vaccination is nothing compared with shingles.  I would do it all again.  Unhappily.   But I would do it.
Title: Re: Shingles vaccine?
Post by: Joe S. on March 13, 2019, 01:05:29 AM
I get the second dose later this month.
Title: Re: Shingles vaccine?
Post by: Skylar on March 13, 2019, 09:57:50 AM
Carebear and Joe S.  Thanks for your reply and knowing you both had it makes me more resolved to do it.

Carebear your response is not what I hope I experience, but it is my fear.  I?m going to time it for when I can deal with swelling and pain. I swell for everything, including injections of water years ago that the immunologist used as a control when allergy testing. It?s reassuring that you survived and went back for the second shot.
Title: Re: Shingles vaccine?
Post by: SjoGirl on March 13, 2019, 01:58:05 PM
Had Shingrex shot and had zero side effects.
Title: Re: Shingles vaccine?
Post by: Skylar on March 13, 2019, 05:18:25 PM
Thanks SjoGirl.  I hope I?m lucky and don?t have any side effects.
Title: Re: Shingles vaccine?
Post by: Tharrell on March 15, 2019, 04:35:49 AM
The new Shindrix vaccine is the one recommended for people with autoimmune diseases. I did hear that there is a shortage though? Has that been fixed? It’s on my list to ask my rheumatologist at the end of the month.
Title: Re: Shingles vaccine?
Post by: jazzlover on March 15, 2019, 03:17:15 PM
My "healthy" friend just had the first of two shots on Tuesday and spent all day Wednesday in bed.

I am not convinced the shots protect us. What is the efficacy of these shots?

Title: Re: Shingles vaccine?
Post by: Carolina on March 15, 2019, 03:27:41 PM
From one published research study:

Overall vaccine efficacy for HZ/Su for participants over 50 y of age appeared to decrease with time (from 96.6% at year 1 to 87.9% at year 4), however the authors conclude that the difference was not statistically significant and this will need to be followed up with longer term studies.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5557227/

Almost 88% effective against Shingles at year four.  I'm in favor of that, for sure.

Regards, Elaine

Title: Re: Shingles vaccine?
Post by: Skylar on March 15, 2019, 08:20:54 PM
The new Shindrix vaccine is the one recommended for people with autoimmune diseases. I did hear that there is a shortage though? Has that been fixed? It’s on my list to ask my rheumatologist at the end of the month.
there?s still some shortages where I am and they want to keep new doses available for the people who are returning for their second dose. Some pharmacies now have some doses for new patients. The pharmacy I get my prescriptions doesn?t have any nor do nearby ones but if I don?t mind driving a distance there are ones I can go to.

I?m surprised that Shingrix was recommended for people with autoimmune diseases given that the QS-21 is suppose to activate and make your immune system go into over drive to help boost the number of people who develop protection from shingles.
Title: Re: Shingles vaccine?
Post by: Skylar on March 15, 2019, 08:23:23 PM
My "healthy" friend just had the first of two shots on Tuesday and spent all day Wednesday in bed.

I am not convinced the shots protect us. What is the efficacy of these shots?
Jazzlover, I?m sorry about your ?healthy?. I will have to plan my shot carefully in case I get an unpleasant and unwelcome reaction to it.
Title: Re: Shingles vaccine?
Post by: Jenny on March 16, 2019, 04:26:38 AM
I had it last month with no side effects, as did my husband.
Title: Re: Shingles vaccine?
Post by: Tharrell on March 16, 2019, 05:46:05 AM
The Shingrix vaccine is a dead vaccine, while the older version was a life vaccine.
It is also more effective than the older version.
. Studies have shown that Shingrix is effective. Shingrix was 97% effective against shingles in those 50 years and older and 89.8% effective for those 70 and older.1 Evidence has demonstrated that Merck's Zostavax vaccine reduces the overall incidence of shingles by 51% and the incidence of PHN by 67% for patients 60 or older
https://www.pharmacytimes.com/contributor/jennifer-gershman-pharmd-cph/2018/01/4-things-pharmacists-should-know-about-the-shingrix-vaccine
Title: Re: Shingles vaccine?
Post by: Carolina on March 16, 2019, 04:02:51 PM
What is the efficacy of these shots?

96.6% protection in the first year, dropping slightly to 88% protection by year 4.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5557227/

I'm up for that!

Had the vaccinations last summer.

Regards, Elaine
Title: Re: Shingles vaccine?
Post by: aussie mum on March 17, 2019, 12:25:24 AM
I'm recovering from shingles.  I had it on my face.

As I'm still in my 50's, I was told I was too young to have the vaccine.
Bizarre as it turns out I wasn't too young to get shingles.

I'm still struggling with the nerve pain,  especially on my nose,  right where my glasses sit. My eye is also a bit uncomfortable and light sensitive.

I get headaches and still tire easily,  especially after a day at work looking at the computer.

Goodness knows how long this will last.  :'(
Title: Re: Shingles vaccine?
Post by: Skylar on March 22, 2019, 07:33:07 PM
I had it last month with no side effects, as did my husband.
Jenny, that's reassuring.

Thanks Tharrell and Carolina.

I'm recovering from shingles.  I had it on my face.

As I'm still in my 50's, I was told I was too young to have the vaccine.
Bizarre as it turns out I wasn't too young to get shingles.

I'm still struggling with the nerve pain,  especially on my nose,  right where my glasses sit. My eye is also a bit uncomfortable and light sensitive.

I get headaches and still tire easily,  especially after a day at work looking at the computer.

Goodness knows how long this will last.  :'(
Oh my goodness, how awful. I've known others how have have shingles at a young age - as you point out you're too young for the vaccine but not too young to get shingles. Will your doctor allow you to have the vaccine when you're over this bout of shingles based on your history? How long have you had the shingles and it's side effects? I hope that you find relief soon.
Title: Re: Shingles vaccine?
Post by: aussie mum on March 24, 2019, 12:32:25 PM
In all respects I was very lucky my shingles weren't too severe.  I had the antivirus medication which must have helped.

I am on a biological medication which lowers my immunity so I assume that's what made me more susceptible to Shingles.

In Australia, the shingles vaccine is free for everyone over 70. You can pay for it yourself if you're over 60. I was told you're not allowed to have it if you're under 60.

I will be talking to my Rheumy about my future options. I have to be careful with any vaccine I take because of the biological.

I'm now six weeks down the track....
The welts from my shingles have completely healed. 
The nerve pain remains.
Title: Re: Shingles vaccine?
Post by: Skylar on March 24, 2019, 06:17:14 PM
In all respects I was very lucky my shingles weren't too severe.  I had the antivirus medication which must have helped.

I am on a biological medication which lowers my immunity so I assume that's what made me more susceptible to Shingles.

In Australia, the shingles vaccine is free for everyone over 70. You can pay for it yourself if you're over 60. I was told you're not allowed to have it if you're under 60.

I will be talking to my Rheumy about my future options. I have to be careful with any vaccine I take because of the biological.

I'm now six weeks down the track....
The welts from my shingles have completely healed. 
The nerve pain remains.
YOu were lucky to have antivirus medication. Makes sense that with your lower immunity you were more susceptible - taking those biological drugs complicate things. I hope you post back what your rheumy recommends.
Title: Re: Shingles vaccine?
Post by: jazzlover on March 26, 2019, 08:34:35 PM
Just for grins, I asked my GP about the new shingles vaccine. He said he would not recommend it to ME. (probably not for anyone at this point)

He has a patient who became extremely ill from it (one shot..never went back for another). He is a corporate exec and had to quit his job, which was bringing him a 6-figure income.

He lost 60 pounds and one of the things that happened to him is that his tendons ruptured and he got TMJ from it.

I do believe I will pass on this one.

If I get shingles, I will go to the doctor ASAP and get the anti-viral .. and then pray.