Any studies on longterm effects of live shingles vaccine and PMR

[Linny3]

I was wondering if anyone knows of any studies that have been done about those of us that contracted PMR after taking the live shingles vaccine. I wonder if PMR will last as long in our system as the shingles vaccine antibodies are active in our system?

The pharmacist says the antibodies last 5+years.

Could this be why some of us have this disease well past the time doctors say it should last? I have been dealing with this almost 5 years. I can't get below 14 &1/2 mg of pred. even with the actemera ( it may be to early to judge the Actemera)

Thanks

[SnazzyD]

I’m not sure how it is any different to having chicken pox as a child and the virus staying in the system for life, which it does, becoming shingles or not. I wonder though if it is the combination of the virus together with the vaccine constituents that are there to cause an inflammatory reaction, that cause havoc in some. It may be that the immune system doesn’t get a more gradual warning that the virus is onboard because a vaccine bypasses the usual entry points and development stages; it’s just there all of a sudden.

[PMRpro Ambassador]

I doubt there are any such studies - studies cost money and the manufacturers aren't going to look closely - but PMR was listed amongst the adverse effects so either it cropped up during clinical trials or there were a lot of reports in the post-launch monitoring.

However - not that close a link as like you I struggle to get to a lower dose but I had never had either a flu vaccine or the shingles vaccine. I think it is actually fairly much coincidence that it was either flu or shingles vaccine or anything else that was the last straw for the immune system.

[Linny3 in reply to PMRpro]

Think you are correct. Thanks for the reply

[HeronNS]

I ended up going down a different rabbit hole and found this site with comments about reactions to Shingrix:

creakyjoints.org/news/is-sh...

[PMRpro Ambassador in reply to HeronNS]

That was expressed at the time it got popular, 2 years ago. I wonder if any opinions have hardened yet? 2 years is about right ...

[HeronNS in reply to PMRpro]

I would like to know. I've had whatever they do to find out if you've had chicken pox added to my blood requisition with a view to getting Shingrix if I have had chicken pox. May rethink if these reactions turn out to have been less than vanishingly rare. Maybe it's safer for those who've never had an autoimmune disease, but these responses are a bit concerning for people like us.

[PMRpro Ambassador in reply to HeronNS]

I have had my doubts all along - they don't usually do clinical trials in people with medical histories. They ARE planning that for the Covi-19 vaccines though.

[HeronNS in reply to PMRpro]

Considering it's mostly the old and the already sick who are the ones who will die I don't think they have much choice if they want something actually usable by the vulnerable population!

[PMRpro Ambassador in reply to HeronNS]

Quite - but they do seem to have realised that for a change!

I don't know - the adjuvant is probably required for a decent immune response in the older population but the question then remains as to whether a deranged immune system will overreact. I think we only get offered the adjuvenated flu shot here and I have had absolutely no problem with it so far.

[HeronNS in reply to PMRpro]

Do you think it's mostly the substances used to stimulate the immune response, rather than the attenuated disease organism, which are largely responsible for adverse side effects?

[benhemp in reply to PMRpro]

The current CDC fact sheet for Shingrix says it is ok for people with rheumatoid arthritis to get it.

My rheumy, who knows of my psoriatic arthritis and PMR, still had me get the Shingrix vaccination. (I just had the first shot 10 days ago; I was sore at the injection site for 3 or 4 days, had a fever the night of the shot, and was more fatigued than normal for two days. The pharmacist who gave the injection told me that a good number of people report a stronger reaction to the 2nd shot. Something I'm not looking forward to!)

Here's the link to the CDC webpage about Shingrix:

cdc.gov/shingles/multimedia...

[DorsetLady PMRGCAuk volunteer in reply to benhemp]

What about this advice in link then?

“Who should get Shingrix

Give Shingrix to immunocompetent adults 50 years and older, including those who-

had shingles in the past

received Zostavax® at least 8 weeks prior

have health conditions, such as chronic renal failure, diabetes mellitus, rheumatoid arthritis, or chronic pulmonary disease

are receiving other vaccines, such as influenza and pneumococcal vaccines, at the same visit

are taking low-dose immunosuppressive therapy

While Shingrix is not contraindicated in immunocompromised people, the Advisory Committee on Immunization Practices (ACIP) at this time does not recommend it for this population. ACIP will review evidence for Shingrix in immunocompromised people as it becomes available.“

[benhemp in reply to DorsetLady]

I missed the part that you highlighted. Thanks for pointing it out!

I'm half done with the two-shot series. Makes me wonder about shot #2. In my case, I am not on prednisone (yet), having stopped in April. I chose to get the shingles shot before restarting the prednisone. My rheumy said I should start the prednisone 10 days after the first vaccine shot. If I do that, I'll be on pred when I get the 2nd shot. My other option is to wait 2 months, get the 2nd shot, wait 10 more days, and then start the pred. Perhaps I should do it that way.

I guess my rheumy doesn't consider people on low-dose prednisone immunocompromised.

[DorsetLady PMRGCAuk volunteer in reply to benhemp]

Well I would double check with Rheumy. .. although if he’s said it’s okay I doubt he’ll change his mind. But maybe worth the discussion.

[PMRpro Ambassador in reply to benhemp]

I've seen it. And DL has already pointed out the relevant bit which is a bit contradictory. It wasn't clinically trialled in patients with autoimmune disorders and experts have expressed concern about how a deranged immune system will react. There is a great deal of dispute about what doses are immunosuppressive - as it suits them I suspect.

[Linny3 in reply to HeronNS]

Thanks for the reply

My dr. is not in favor of me getting the new vaccine. Says I am still protected from the live one I had. Don't think I would get it even if she said it was ok.

[Cathpet in reply to HeronNS]

Very interesting comments. I am in New Zealand . My general practice doctor warned against having a shingles shot. I have had Giant Cell Arteritis and polymyalgia.

[DorsetLady PMRGCAuk volunteer in reply to Cathpet]

Sensible doctor

[gwenyth in reply to Cathpet]

I suspect the only shingles vaccine available in NZ (as in Aus) is Zostavax (using a live virus), as Shingrix is not yet available.

[ParsnipSoup]

Zostavax on has a 51% protection rate against shingles. The older you get the chance of getting shingles lessens.

I was given zero information prior and at time of vaccination, My GP unaware of possible serious side effects Exacerbation of Asthma and PMR. When I reported it to GP said Dr’s don’t have anything to do with vaccination, it is the Nurse’s job.

I feel so upset sometimes to think I have been given this disease which affects our lives badly.

[HeronNS in reply to ParsnipSoup]

I thought it was the exact opposite - as we age our natural immunity decreases so the chances of pre-existing varicella-zoster virus re-activating increases?

[PMRpro Ambassador in reply to HeronNS]

Quite right ...

cdc.gov/shingles/surveillan....

"Your risk of getting shingles increases as you get older. The most common complication of shingles is postherpetic neuralgia (PHN), which is severe pain in the areas where the shingles rash occurred. About 10 to 18% of people who get shingles will experience PHN. The risk of PHN also increases with age."

[HeronNS in reply to PMRpro]

So if we don't get vaccinated it's of prime importance that we get treated with an anti-viral as soon as possible if shingles appears.

[PMRpro Ambassador in reply to HeronNS]

Yup. A friend of ours had it and was really ill for months, was in hospital for ages - mainly the post-herpetic neuralgia.

[HeronNS in reply to PMRpro]

Guess it's as well I'm getting that blood test done then, whether or not I decide to go ahead with the vaccination. Nowadays we have to phone to book a time at a blood clinic. Getting through on the phone is the first adventure although that is improving. Then, unless it's an emergency, it's about three weeks wait for the appointment to come round. Pre-covid we used to just amble up to the local hospital and if you picked your day and time right you could be in and out in half an hour....

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Yes those were the days! Same for x-rays as well.

[PMRpro Ambassador in reply to HeronNS]

No idea what is happening at present - bloods used to be turn up and wait and, like you, if you chose your time it was a doddle. Last lot OH had, the nurse came and did it - but I had to take the samples to the hospital. I must need bloods for my anticoagulant and the approval must be due for renewal too soon-ish. And the GP is on holiday - so will be bombed all next week after she gets back ...

[ParsnipSoup in reply to HeronNS]

Apparently not. In UK it is only offered to people aged 70 to 78 but not every year , could be 73 but not 75 . 80 year olds are not offered it as it is less effective the older you get, it only gives 51% anyway.

I was told there is a NHS three year push for the vaccination , that was over a year ago.

[PMRpro Ambassador in reply to ParsnipSoup]

They must have bought stocks and need to get rid of it ...

[ParsnipSoup in reply to PMRpro]

The thought has crossed my mind but I thought perhaps I was being cynical.

[PMRpro Ambassador in reply to ParsnipSoup]

Cynical??? Moi? Toi? Perish the thought

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Heavens forbid 🤦🏻‍♀️

[HeronNS in reply to ParsnipSoup]

Sorry, not sure what you're referring to, lost somewhere in the thread. Shingles vaccination? I live in Canada. In my province shingles vaccine is not covered by public health. My husband got his (Shingrix), with prescription from GP, at the pharmacy. Covered by our additional private insurance. I don't know if there is a shortage here or not. Canada was one of the first places to approve Shingrix. It is over 90% effective, much better than Zostavax, particularly in the elderly, and I believe it retains its effectiveness much longer as well. I would never consider Zostavax.

[PMRpro Ambassador in reply to HeronNS]

You mean PS's last comment? Replying to me when I said "They must have bought stocks and need to get rid of it ..."

Waste not, want not ...

[HeronNS in reply to PMRpro]

No, further back, to moi. "Apparently not. In UK it is only offered to people aged 70 to 78 but not every year , could be 73 but not 75 . 80 year olds are not offered it as it is less effective the older you get, it only gives 51% anyway.

I was told there is a NHS three year push for the vaccination , that was over a year ago."

[phebamom]

I do not know if it causes it. I do know my primary and rheumy both agree I can not get the shot. They tell me it would make the illness worse. My husband's primary refuses to give him a shingles shot because she believes it is connected to heart issues. So, I can say I know of three physicians who do not give a shingles shot. The flu shot is another issue. They are very certain of my need for a flu shot. I get one every year, no issues, no flu.

[Linny3 in reply to phebamom]

Thanks for your reply. The medical field sure is making this hard.

[PMRpro Ambassador in reply to phebamom]

WHICH shingle shot though?