For information: Shingrix vaccine on NHS

[Cally55]

I was talking to the rheumatology nurse yesterday about various things including that my husband has shingles again and that I had been advised against the live shingles vaccine because of pred and azathioprine and she said that the Shingrix dead vaccine is available on NHS from the beginning of this month so......I rang the GP surgery and they investigated and now I have an appointment at the end of the month, it takes a fortnight to come apparently.

[PMRpro Ambassador]

Next problem: get in contact with the GP practice!!!!!

[Cally55 in reply to PMRpro]

I was pleasantly surprised, I rang them about 2 pm and receptionist said never heard of it but she'd ask the nurse, twenty minutes later she rang back and made the appointment. 2 minutes later the nurse phoned me as well!Our practice has got its act together about appointments now, provided you can use the internet to book, if you ring the surgery they are booking for 6 weeks ahead! I worry about those who can't use the internet for all sorts of good reasons.

[PMRpro Ambassador in reply to Cally55]

That was mentioned on Sky News this morning - we are all internet savvy but it terrifies me trying to book things!! I think that we are supposed to be able to use the website here to book all forms of appointment but I far prefer phoning and can even go and do it in person if at the hospital for something else. Pity help the elderly who haven't got wifi or a smartphone - I don't have a phone, just one that makes calls! - or know anything about how to do it, have poor sight or are just plain elderly.

[Longtimer in reply to PMRpro]

My sentiments entirely!...I don't have an iphone, have one that texts and cal ls....I told my son when we went out for my birthday, the world will be happier when my generation has gone.....he looked shocked, but many places we passed at this coastal village said "cash only"on the door......great!....

[PMRpro Ambassador in reply to Longtimer]

That makes it easier to hide from the taxman ...

[Longtimer in reply to PMRpro]

Oh yes I know, I use my card, but I also keep using cash for those that can't use a card.......it all seems so unfair to me....and doctor's appointments have exposed a lot too.......some can only ring up....waiting hours......BT are talking of getting rid of landlines....I could go on!!......my neighbours are in their eighties they struggle with different things.......think I need to lie down now!...

[Hidden in reply to Longtimer]

It’s not just those inTheir 80’s 😜 we are both 60 and lost our jobs due to covid and have decided to live off savings until pension kicks in at 67. We have both noticed a big advance in technology since the pandemic started and being out of the work place and stuck in the home (place) 😝for months has emphasised this. My new combination oven is like operating the starship enterprise! Luckily we have grandchildren you know everything (apparently) 👵 👧

[Longtimer in reply to Hidden]

Quite agree, but with technology they have found has it`s downsides....teenagers etc on the media with depression...awful.....I see many people walk past my house glued to the phone unaware of the world around them...I just don`t get it...but then I`m an oldie I suppose now at 70...although I am always going to be 69!!....

Love my oven, dread it if I have to change it, but would check first that I am up to it!

Yes, the grandchildren can show us.....but too quick, they don`t show us slowly....

I hope things will be ok for you both losing your jobs....

[PMRpro Ambassador in reply to Hidden]

My daughter just sent me a soupmaker - the model called Total Control! The lid is just a circle of press buttons and it took some courage to work out how it works, I like to watch one, do one under supervision, fly alone! In the end it wasn't as bad as I thought - and then I found a review on YouTube that showed it very well!!! Typical ...

Things have changed a lot here - was always cash until Covid, I fear I get a bit annoyed now when someone is insisting on finding the right change from the bottom of their purse! I don't like too much payment having to be done on websites though ...

It was OH who put me off - not the grandchildren!

[Hidden in reply to PMRpro]

We have a soup ‘kettle’ which is kind to me. Simply put the recipe ingredients in and select smooth or chunky and 30 minutes later hey presto! I have a bread maker too but that takes 3 hours but home made soup and bread makes me feel like a 1950’s housewife 🤣I’ll be boiling the bedding in a copper pot the shed next 😂

[PMRpro Ambassador in reply to Hidden]

Similar then - I used to have a breadmaker and used it a lot when the girls were at home. Made the house smell nice!!

[Floridafan]

Just read this on NHS website:“People with a weakened immune system cannot have live vaccines. They will be offered a non-live vaccine called Shingrix. It activates the immune system but also contains an ingredient called an adjuvant, which helps to boost the response to the vaccine”

It’s the adjuvant bit that worries me slightly, I think I have read that the adjuvant in the flu vaccine given to the over 65’s can cause flares in people who have PMR. Please correct me if I’m wrong or if anyone has further information on adjuvants I’d be pleased to hear about them as I’m in two minds which flu vaccine this year as I’m now 65!

[Norski1 in reply to Floridafan]

Hi Floridafan I get the flu jab with the adjuvant every year and am usually fine. I got it last October and flared the same day with my Pmr. It took months to get it under control, then when I began to feel better I had a Gca flare from my 2nd Covid vaccine which landed me eventually in hospital. I am not having either again, take care, N xx

[HeronNS in reply to Norski1]

The adjuvant used in Shingrix is a new kind, not the same as in some flu shots. I have never had an adjuvanted flu shot as they are only available to a very few people where I live.

[HeronNS in reply to Floridafan]

I was concerned about the Shingrix adjuvant too. However, a month after my second Pfizer shot I was able to have first Shingrix. I did have quite a strong reaction - mainly extreme exhaustion - and I seldom react to vaccines other than slightly sore arm from Pfizer. Anyway since the spring I've been struggling with quite a serious PMR flare and oddly enough after the Shingrix I've been able to taper fairly steadily using a modified DSNS taper (going more by how I feel the evening before my 2 am dose than the date). So either the Shingrix had no bad effect on my PMR or it actually did something beneficial to regulate my immune system. So I am no longer nervous of Shingrix and am curious to see how I react after the second shot due about 4 months after the first.

[keeptalking]

Well done you for chasing your go surgery and getting a good outcome. My surgery receptionist and practice nurse knew nothing about it and just keep saying I’ll have to wait until I receive a letter.

Don’t know how I’ll receive a letter if they don’t know about it!!! 😃😃

[pinks33]

I too had the Shingrix vaccine two days ago. I rang my GP, and the receptionist at first booked me in for the old zostavx vaccine, even though I had asked for Shingrix. But when I explained further about live vs non-live vaccines, she helpfully got a nurse to call me back. The nurse knew about it, and explained it had to be ordered on a patient by patient basis, and approved by a GP, and an appointment was made for five days later. I was told I was the first patient at the practice to have Shingrix. The only symptom so far is inflammation at the injection site, and discomfort when I lie on it at night. Also deep fatigue, but that is nothing new for me at the moment, so may not be related to the vaccine. I will post again if I notice any other adverse symptoms.

[wil3y in reply to pinks33]

Because of my newly diagnosed PMR, I'm reading a college text book on inflammation and aging (called the Biology of Human Longevity, Inflamation, Nutrition and Aging in the Evolution of Lifespans by Caleb Finch). He says that vaccinations seem to have a positive action on other inflammations which seems to square with HeronNS's experience. So I may also check on getting the Shingrix in a few weeks as shingles can be as painful and bad as PMR for many.Just started on 10 day prednisone trial as a method to verify I have PMR: 30 mg 5 days, 15 for 5 days, 10 for 3 days. 30 mg gave me energy and fairly symptom free except for slightly burning shoulders. Thanks to advice on this site I am taking it very very slowly on activity, 1-2000 steps per day. Now am on day two of the 15 mg and boy did I have insomnia and then bizarre nightmares last night! So I am hanging on for what could be quite the emotions roller coaster ride, the side effect I have most dreaded!!

I am so appreciative for the information on this site!!! Thanks to all of you long time contributors I have felt less like I'm going down this road blindfolded!