Shingles Vaccination concern

[Paulamac77]

Has anyone had the shingles vaccination after ceasing to take steroids? I tapered to zero successfully 6 weeks ago but I still have to take 15mg of methotrexate a week (I have GCA). Because I will become ineligible by the end of the year due to my age, my doctor is anxious I have the vaccination as soon as possible. I am wary however because my immune system is very poor. I pick up infections very easily and I am very concerned about a “live” vaccine although I have had a flu jab every year with no problems. I’d appreciate your comments before I commit to this.

[DorsetLady PMRGCAuk volunteer]

Hi,

The newest shingles vaccine - Shingrex - is not live as was the previous (Zostavax) so there should not be a problem.

Having said that I declined last year when offered, had been off the Pred about 18months then - never been offered since!

Up to you!

[Paulamac77 in reply to DorsetLady]

Thank you so much for your reply. I asked Rheumatology too and they said the vaccination shouldn’t cause me problems but the decision is mine. If I don’t have it now I’ll not be offered it again because I’ll be over 79. I’m going to have to ponder ....

[PMRpro Ambassador in reply to Paulamac77]

It will be the Zostavax vaccine on the NHS, not the Shingrix. One of the listed side effects is PMR and the evidence is that it doesn't work particulalry well in patients over 80-ish.

[PMRpro Ambassador in reply to Paulamac77]

Just replied and lost it!!! I will try again.

This is a link to my previous posts about it.

healthunlocked.com/pmrgcauk...

On the NHS it will be the Zostavax vaccine, not the new Shingrix one (inadequate supplies for it to be issued to state health care systems, only available privately at £460 for the 2 shots required). The evidence is that Zostavax doesn't work particularly well in older patients.

[Paulamac77 in reply to PMRpro]

Thank you so much for this information. Having read a number of different articles now, I am much less inclined to consider vaccination. Having gone from a fit and (apparently) healthy 75 year old to the train wreck I am today I really don’t want to fight yet another problem if it can be avoided.

[jinasc]

Can I ask why you are still on Methotextrate?

Shingles, I did not bother with the vaccine as I had had shingles twice. The second time I recognised the symptoms and contacted GP who immediately arranged the prescription which if taken within 24 hours of symptoms appearing, stops it in its tracks. It worked.

I had GCA second time shingles appeared...........................then discovered a mate who had visited me her two grandchildren had chickenpox and she never thought to tell me. I then warned all my friends not to come near me.

[HeronNS in reply to jinasc]

But I keep being told you can't "catch" shingles from someone with chicken pox. If you haven't had chicken pox you can, theoretically, catch it from someone with shingles (need contact with the lesions).

[PMRpro Ambassador in reply to HeronNS]

You can't catch shingles no, but I suppose the challenge with the virus might be enough to upset your immune system if you have had CP in the past.

[Paulamac77 in reply to jinasc]

As I understand it, in the low doses I took to aid my prednisolone tapering, methotrexate continues to keep possible inflammation under control without recourse to the steroids again. My rheumatologist will review this at the end of the year and may well then reduce the dosage she tells me, but there is no promise to stop them entirely. I have less concern over taking MTX than continuing to take steroids I must admit.

[Blearyeyed in reply to Paulamac77]

They may tell you that you have to have the Zostavax instead of the Shingrex on the NHS , and say it's fine , but if you want to take the Shingles vaccination , but are not confident with or willing to take you could request the other vaccination voicing the immunity issues and possible side effects that have been shown using it by some PNR Patients.

They will argue the point that there is minimal " live" content in a Zostavax vaccination now and may decline your request.

It will be cost and guidelines that prevents them giving it to you on the NHS , but it doesn't mean that you can't have the Shingrex vaccination done at your local surgery by nurses you are used to.

You can request to have your surgery order in a vaccination that you pay for at private rates if that is your choice of medication over the one available for free , some surgeries unfortunately don't follow the guidelines and say that it isn't possible though.

Unfortunately , the cost can prohibit alot of us from making these choices though.

[PMRpro Ambassador in reply to Blearyeyed]

... since the cost for 2 shots of Shingrix done privately is £460!!!!!!!

[OutdoorsyGal in reply to PMRpro]

Finally, an area where US medicine beats NHC!

My two shingrix shots would have cost $130 each, but were fully covered by the preventative care part of the ACA (Affordable Care Act = Obamacare).

Fortunately my MD was on top of things and recommended I get the shots before turning 65 and going on Medicare which WOULDN’T have covered it.

The scarcity of vaccine meant getting on a waitlist at two pharmacies and hoping doses came in on time. I got the booster the DAY BEFORE my ACA coverage ended!

[PMRpro Ambassador in reply to OutdoorsyGal]

Yes - so the insurance paid. But the problem in Europe is not that they won't pay, it has been approved for use but they can't get supplies because not enough can be made yet to supply all the health care systems with the volume they require because the uptake in the US was far greater than was expected. It isn't the NHS is worse - they just can't get the stuff.

[OutdoorsyGal in reply to PMRpro]

I was referring to the cost, which is less than half in the US than quoted above in GB.

[PMRpro Ambassador in reply to OutdoorsyGal]

I imagine that if you were a self-payer it might be different. In the UK it is only available through private medicine - and prices vary.

[OutdoorsyGal in reply to PMRpro]

The $130x2 WAS the self-paid price. I asked.

[Robinsnest72]

I also just replied and lost it. Here in Canada the age is 70 to be covered. My GP kept phoning so I gave in. It was Zostavax. Several weeks later developed PMR and studies show this vaccine and PMR can be connected. Also my neighbor much younger than I am had the vaccine a few years ago. She now has shingles

[PMRpro Ambassador in reply to Robinsnest72]

Yes, they rarely bother to tell you it is not 100% effective!!!!

[OutdoorsyGal in reply to PMRpro]

However, they do claim that the cases that occur after vaccination tend to be far less severe, and with shingles, any reduction in severity is a good thing.

[Paulamac77 in reply to OutdoorsyGal]

I think what worries me most is the risk of developing PMR.

[OutdoorsyGal in reply to Paulamac77]

Well I already had it....

[Peptink]

Not meaning to sound anti-vax, but my PMR started shortly after I received the shingles vaccine about 6 years ago. That was not a coincidence in my opinion.

[Paulamac77 in reply to Peptink]

I declined the vaccination in the end. I am certainly not anti-vax but on balance I felt I could not risk even the slightest chance of developing PMR. I am also reducing MTX dosage and should be able to stop taking it entirely next year. It’s now 18 months since I ceased taking pred. My hair and skin are recovering and my weight is returning to normal. Thank you for the support everyone, couldn’t have done it without you.

[Peptink in reply to Paulamac77]

Congratulations on stopping the pred. I’ve been on it for almost a year. I’m decreasing and am almost down to 7. I’ve had the full support of my rheumatologist. When I need to go up, she supported that. I’ll be happy as well when it’s all over. My hair has got so thin.