Shingles injection

[Bonnig]

I've finally made it down to 1/2mg every other day. My Doctor wants me to have the shingles injection. Does anyone know if this can cause an issue?? I've been reducing the pred for 2 1/2 yrs, very very slowly and haven't had a flare and don't want one at this stage. Appreciate any thoughts. many thanks!!!

[PMRpro Ambassador]

Are you in the UK or the USA? Which shingles vaccine is it?

[Bonnig in reply to PMRpro]

USA. It is NOT the live one

[PMRpro Ambassador in reply to Bonnig]

There is little evidence or experience with it - none in Europe and not a lot from the USA. They aren't tested in patients with autoimmune illnesses.

[Bonnig in reply to PMRpro]

Oh gosh, don't know what to do?

[PMRpro Ambassador in reply to Bonnig]

Me neither. Personally I want others to do the experimenting!!!!! But someone has to start!

Give it a bit longer - I'm sure there are people on the foum who have had it.

[GOOD_GRIEF]

When you get a vaccination, your immune system reacts. You can expect some or all of the following: low grade fever, headache, body aches etc. Just as you would when you are contracting any kind of infection. It's your immune system doing what it was intended to do - identifying the invader, manufacturing the appropriate antibodies to defend your system from the invader, and "remembering" how to do it again if you are ever exposed to that invader.

The difference is when this is in response to a vaccine, the mildly unpleasant symptoms are gone in a day or so, and you are unlikely to ever face developing the illness for which you have been vaccinated.

The invader in this instance is dead, and therefore can do you no harm. Talk to your doctor before the shot is administered if you have had any previous adverse experiences with a vaccine, and talk to them about any allergies. Sometimes, a component of a vaccine can cause issues.

If you are young enough to have been able to get the chicken pox vaccine as a kid (under age 50), and never had chicken pox, you won't need to be vaccinated for shingles. However, the CDC says 99% of Americans 50 and over were exposed and therefore the treat of shingles is real for them. It's not recommended for those over 50 to get a test to see if they did or didn't have chicken pox. Doesn't seem to be much point, and it's not cheap.

Bear in mind that there is some indication that this vaccine loses efficacy after about 5 years, so you may need to do it again down the line.

No one likes getting shots, but I promise you that you won't like shingles, or the possible complications and aftermath, at all.

[PMRpro Ambassador in reply to GOOD_GRIEF]

It isn't clear how long Shingrix lasts - they anticipate a long coverage. At present it is 3 years. The older Zostavax requires a repeat after 5 years.

[GOOD_GRIEF in reply to PMRpro]

The CDC is saying 4 years

cdc.gov/vaccines/vpd/shingl...

[PMRpro Ambassador in reply to GOOD_GRIEF]

Which will go up every year ...

[Bonnig in reply to PMRpro]

I was told it is a two injection process. I have to go back again for another injection in 2-6 months. And they say it is 90% effective. Much higher than the flu shot. I didn’t think to ask how long it is effective

[PMRpro Ambassador in reply to Bonnig]

They don't know yet - that was the conversation GG and I were having. It is a new vaccine, they can only tell how long it lasts as time goes on.

[HeronNS]

Shingrix is much more effective than Zostavax. If I were sure I'd had chicken pox (I don't think I have) I would bite the bullet and get it. Frankly I think the chance of the vaccine doing anything nearly as bad as getting what shingles sounds like is vanishingly small. It is a vaccine which causes a fairly severe "flulike" reaction for one or two days, judging from what my husband went through, but once that was over he recovered completely, and overnight (he doesn't have PMR).

[Baileyw06]

I just got mine today, I will keep everyone informed.Hope everything goes well!It is not a live virus!

[Bonnig]

I went for it and received it today. I will everyone posted as well!

[PinkertonCat in reply to Bonnig]

What dose of prednisone are you on?

[Suedeshayes]

Hi, For my own interest, may I ask how long you have had polymyalgia ? And, how are you feeling at this moment? I’m keen to know if being down at your level means you are free of tiredness and aches. Thanks. Sorry I know nothing about your original question. 🥴

Sue

[PMRpro Ambassador in reply to Suedeshayes]

That is something that varies for everyone - it also depends on whether you have other joys such as osteoarthritis. Pred helps with a lot of things and if you have them they aches may return as you reduce.

[Bonnig in reply to Suedeshayes]

I have had PMR for 2 1/2 years. My achiness is at a minimum and livable.

I tend to be tired but quite frankly, I believe it is due to not moving. I don't have much stamina anymore. Before all this, I was very active and went to gym 4-5 times a week. I had fallen into despair and stopped my old life. I'm just beginning again to get into gym. My body has seriously atrophied from not moving and all the pred, so I anticipate a difficult road back, yet can't remain like this, I have to try to live and enjoy again.

[Suedeshayes in reply to Bonnig]

I’m sorry to hear that the poly and steroids have been so debilitating, it is an unpleasant illness. I have had it for nearly 2 years, and I do get tired with it. I have managed to keep myself fit with walking and aquacise regularly, but I do need to push myself. Good luck with the journey and hope it burns out soon. Sue

[PMRpro Ambassador in reply to Bonnig]

I continued to go to the gym 4 or 5 times a week after I developed undiagnosed PMR - it was the only thing that kep me upright and mobile. I didn't do the same things - I switched to aquafit to be able to do adapted Pilates and yoga. Machines and step were out though.

[Harleybum]

Can only get the live one here in Oz, I would have Shingrix if it was available. Shingles can be really awful.

[OutdoorsyGal]

I had both Shingrix shots while on Prednisone for PMR. No issues.

I also had Zostavax several years before PMR. My MD felt Shingrix was much better and advised I get it BEFORE going on Medicare which doesn’t cover it.

The shots must be spaced out properly, and also not given too close to a flu shot.

Having watched people suffer shingles outbreaks, I want to avoid that if I can!

[PMRpro Ambassador in reply to OutdoorsyGal]

What I would like to know is how the pred's suppressive effect on the immune system affects it.

[GOOD_GRIEF in reply to OutdoorsyGal]

It's covered like a prescription under Medicare Advantage or Medicare Part D.

[OutdoorsyGal in reply to GOOD_GRIEF]

Good to know. I have a MEDIGAP policy. And opted NOT to take Part D at this time.

But my MD did not know what sort of Medicare coverage I would opt for when she said that...

[kewl1]

I had a shingles shot about 2 years ago at trhe age of 68. Recommended by my doctor and the Canadian government was giving it free to a narrow age group (may have been 65-70 or something like that). My wife and I had been seeing many TV commercials every day saying that one out of 3 would get shingles. I was always saying that in my entire 68 years I had never known one person that had shingles. We both got the shot.

Then this summer my wife's doctor said that it was only 50% effective and that she wanted her to get a new 2 part shot that is 99% effective but not free. C$300 for the two parts. She hasn't had it yet but meanwhile, I get the freaking shingles!! I got a rash on the side of my stomach and after a few days went to the walk-in clinic. The doctor said yes you have shingles. He said if it is less than 72 hours we can help but more than that we cannot. I believe that I must have been pretty close to the 72 but I got the medicine and took it for a week. I think I must be extremely lucky. Between that not-so-effective vaccination, and the pills my rash didn't get to bad. While I found it very irritating and somewhat ainfull, it never got to the point of even blistering so it must have been very mild. I have heard horror stories about extremely painful blistering and one friend has had it five times and she is only in her 40's.

Now it seems like everyone I know is getting the shingles, many in their 40's and I read that it has become more common over the past 40 years or so. A 2016 study looking at British Columbia found that the rate of shingles in that province increased from 3.2 cases per 1,000 people in 1997 to 4.5 in 2012. Researchers aren’t sure why it’s becoming more common, though they have theories. Thankfully mine was gone in 6 weeks. I am very lucky. And now a pharmacist has told me that since I had the one vaccine plus I got shingles, I should be quite immune to it now without getting the new 2-part vaccine.

Didn't mean to write a book here but just want to pint out that Shibnkles is getting very common, it can be very debilitating and it is also very preventable now.

[Nagswoman]

I was told not to have a shingles jab under any circumstances.

[PeachyLife]

I had the old shingles live vax several years ago, and then got the first Shingrix (because I do NOT want to get shingles) last fall a few weeks before being diagnosed with PMR. When it came time for the second Shingrix, I talked to my dr and he advised not to get it at this point, nor any other vax unless I discussed with him first. Will discuss the flu vax when I see him next week. For the record, I had no adverse effects from the first Shingrix shot, although some people do get flu-like symptoms.

[PMRpro Ambassador in reply to PeachyLife]

Had you had PMR symptoms BEFORE the Shingrix shot? There are experts who have expressed reservations about it because the adjuvant stimulates the immune system very effectively - and they are concerned that may have implications in autoimmune disorders.

[Bizgirl]

I had my second shot on Friday. I took a picture of my reaction but I can’t see how to post it in replies. I had a headache today and felt tired. The injection site is red and swollen . I didn’t have any negative reactions with the first shot.

[PMRpro Ambassador in reply to Bizgirl]

You can't post an image in a reply, only in a new post.

[Christophene]

I had the shingles injection early in my diagnosis with no bad effects. For some reason or other, not logical, I didn't get another. But I always get the flu shot. Although I had insurance, I asked the pharmacist how much it would cost if one did not have insurance; in the US, over $250!