PMR and Zostavax vaccine for Shingles

[Cross-stitcher]

Hi, I know that this topic has been covered before but I thought I would add my own experience of a GP who flatly refuses to believe that there could be any link between my receiving the Zostavax live vaccine for Shingles in September 2018 and my subsequent diagnosis of PMR 6 months later. I have now messaged him as follows:

"Thank you for replying so quickly to my previous question about the Shingles vaccination I received last September. I appreciate that the last thing Primary Care Practitioners want are patients loading them down with information they have gained from the Internet, often of dubious provenance. However, even Merck themselves have stated that PMR is a "serious vaccine-related adverse reaction" to the Zostavax vaccine - see the third main paragraph in merckvaccines.com/Products/...

My concern is that, if PCP's are unaware of this, it will not be reported under the Yellow Card system, and statistics showing the true incidence of this possible side-effect will not be available. I also understand from the charity PMRGCA.co.uk that this side-effect may occur at any time from one week to 6 months following vaccination with the Zostavax live vaccine - see pmrgca.co.uk/content/home-page and search for Zostavax or Shingles. I hope the website links I have quoted will work for you."

It will be interesting to see how he responds. Is there any way to get this info out to more PCP's in the UK? How many of us on this Forum have a similar experience?

[Hidden]

I will be very interested to read his reply!......

Why do they never listen?

[Cross-stitcher in reply to Hidden]

Due to the Bank Holiday, I'm not expecting a reply before next Tuesday, but I'll copy anything he says to this thread.

[Cross-stitcher in reply to Cross-stitcher]

Well, I obviously touched a nerve - email reply received in less than an hour as follows:

sent 3:20PM on 03-May-2019

Medical report submitted for (my name). Problems reported: Zostavax side-effects

Closely followed by:

sent 3:34PM on 03-May-2019

OK Thanks (my name). I am happy to report your PMR as a possible adverse reaction to the shingles vaccine using the Yellow Card system.

You might well be right!

Best wishes.

(Male GP's name)

So he can change his mind - good for him !! Now, how to get the info to other GP's ???

[Hidden in reply to Cross-stitcher]

Well Good For Him! Not so good for you, once the yellow card system is in place it should be listed in the Side Effects but with higher incidence if more reporting is done.

[PMRpro Ambassador in reply to Cross-stitcher]

Excellent student - give the boy a gold star!!!

[Marymon in reply to Cross-stitcher]

Good news, I will print out your links and take them to the surgery, ‘for the attention of’....

[Cross-stitcher in reply to Marymon]

I actually approached this through the Practice Manager at first, and it was she who told me to raise it with the GP and that she would support my request for "Yellow Card" reporting. Sometimes the round-about route works better, and is seen as less "confrontational" by the GP. Good luck - we need to get GP's better informed about the risks of this Merck vaccine.

[Marymon in reply to Cross-stitcher]

Will give it to Practice Manager,👍

[Suffererc in reply to Cross-stitcher]

I also got PMR from an adverse reaction to Aldara cream. At first neither GP nor Consultant Dermatologist would agree. Then they submitted a yellow card, so doubt was there too

[SnazzyD]

Nice one. Well done.

[Cross-stitcher in reply to SnazzyD]

Thanks SnazzyD. There are only 2 GP's at the rural practice where I live in Somerset. The female is lovely and very open to new information and ideas and accepts that I have a background in Biology and can usually sort the wheat from the chaff on the Internet. But she has been away on holiday recently. The other, male, is much more brusque and "sure of himself". Guess which one I normally try to book with?

[SnazzyD in reply to Cross-stitcher]

It’s beautifully worded.

[Hidden in reply to SnazzyD]

The Pen Can Be Mightier Than The Sword! 😉

[Pippah45]

How interesting thank you for flagging that up. I had an awful brush with shingles about 10 years ago- immediately prior to being diagnosed (not before time) with Hypothyroidism. I decided to go for the Vaccine last year as I didn't want to repeat the lurgy - but if I had known it could trigger PMR I would have thought again! I am currently under suspicion of having GCA - possibly nothing to do with the vaccine since at least a year has passed but who knows? Except nothing we do to our bodies can really be ruled out it seems.

[Cross-stitcher in reply to Pippah45]

Hi Pippah45, What you say is interesting. I, too, am hypothyroid but have been stable on 50microgram Levothyroxine for 15 years. I agreed to the vaccine because my father had a horrible bout of shingles in his 70's. Why are the NHS and NICE not recommending the newer attenuated vaccine rather than Zostavax? The USA, Australia and New Zealand seem to be going down this route.

[Pippah45]

The short answer may be "money"? Some things don't make sense when it comes to NHS prescribing. I felt terrible on Levothyroxine so went the NDT route more or less without help. It doesn't make sense to me that "one size fits all" as they assume with Levo. Despite the fact that NDT was used for many years. The poor people who need Liothyronine are being denied it because of the cost yet patients in other countries can access it at a fraction of the cost currently charged to the NHS.

[Cross-stitcher in reply to Pippah45]

I guess hypothyroidism should really be a separate strand, rather than linked to PMR. However, just to add that, apart from having TSH, T3 and T4 blood tests annually, I also added iodine to my diet by ONLY using sea salt in all my cooking and eating. Seems to have helped. However, since being diagnosed with PMR, I am going to ask for further thyroid blood tests - I do wonder whether my current insomnia and associated degree of "manic brain" and weight loss might be due to a new thyroid imbalance caused by PMR or Pred at 15mg. Of course, it may all settle down as I taper.

[Pippah45]

There are so many overlaps it is difficult to figure out. From what I have learnt on my thyroid journey there are many things in common with PMR and GCA for example low vitamins B12 & D3 and low ferritin and folate. Current ranges are too broad. Also high B12 can indicate inflammation too it's a minefield!

[Cross-stitcher in reply to Pippah45]

A minefield indeed!! I feel so fortunate to have taken good health almost for granted for 70 years. Most of my forbears were dead by my age. But there's no money in Gerontology and what happens when multiple and complex interlinked systems stop working together and set off on their own versions and timelines of "ageing".

[Marymon]

I had the Zostavax in January 2018, developed PMR 3 months later. Having researched it and found the link to Merck and claims being made against them, I told Dr. I thought that is why I developed PMR, he was very rude and dismissive, usual ‘you shouldn’t believe what you read in the internet’. I said they shouldn’t administer this vaccine without informing patients of the more serious side effects.

Had already had run in with him over researching PMR.

Needless to say he is off my list of GPs. when booking an appointment.

[Telian]

I didn't have the shingles jab as GP said to be well when I do. When I asked what vaccine was used no-one at the surgery knew including the nurse who administers it!!! Diabolical.

[Summerrental]

I was diagnosed 2 years after I had the Shingles shot. I wonder if my PMR was caused by stress. I went thru a lot of stress before the PMR showed up.

[yogabonnie in reply to Summerrental]

I think stress is a HUGE factor with PMR. I was in a bike/car accident (I was the bike) and then immediatly after got a terrible fluish type virus on a long flight (with my cracked ribs). And then, lo and behold. PMR. I had had a Shingles shot..but I think that was a year earlier. Stress is a real culprit !!

[SuziCutie]

Just thought I would add to this thread. I had the shingles vac October 2017 diagnosed with GCA/PMR December 2017 !!

[Cross-stitcher in reply to SuziCutie]

I hope you have discussed this with your GP and, if you are in UK, have asked for it to be reported under the Yellow Card system.

[SuziCutie in reply to Cross-stitcher]

Have only just read about the possible connection. I see my rheumatologist in October. Will definitely bring it to his attention.

Thanks for drawing our attention to it.

[Ricketts40 in reply to SuziCutie]

The timing of your shingles jab and the onset of PMG is the exact timing of my own. No stress was involved as I had just finished wallpapering a large living room and extension and enjoyed doing it. After my diagnosis of PMR I also found a link on the internet that PMG can be caused by the Shingles jab and did tell my GP. Whether he has done anything about it I dont know, but when I next see him I will mention it again.

[SuziCutie in reply to Ricketts40]

I reported to yellow card and have printed out the information on Zoster vaccination info. I plan to take to my rheumatologist appointment next week and also give a copy to my doctor.

I don’t blame anyone for this. I wanted the vaccination. I didn’t want shingles!

I had never heard of PMR until it hit me.

Would I have had the vaccination if I knew of the PMR risk?? No I wouldn’t. Shingles can be treated if caught early enough.

So we need to raise awareness as much as possible.

[Babbaganoush in reply to SuziCutie]

Totally agree. Same happened to me.

[Babbaganoush]

Exactly the same reaction to zostavax. Pmr after 2months. Nobody told me of this possibility. Ruined an otherwise healthy body. Cheers.

[georgedog]

Is this info appropriate for

getting the dead virus....My R suggested the dead version...I am here in the US.

George Dog