My rheumie has recommended that I have the shingles jab. and informed the vaccination centre. A lady from there phoned me regarding this and I said I would prefer the non-live vaccine as opposed to the live one. She said that I could not choose as the nurse would decide after seeing me. I was diagnosed with PMR/GCA in April 2017 and managed to get down to 7mg this year but have since had a bad flare of symptoms at end of Sept and went up to 10mg and then 15mg. The 15mg seemed to reduce the pain and now reducing dose again, Down to 12mg at present and hoping to go down to 11mg next week. What I want your advice about is, should I take the live shingles jab if they recommend it.
Thank you, Pat
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PatB1948
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I have just read all the related posts on the shingles jab and it seems the opinion is to insist on the Shingrix vaccine so I’ll do that. My appt is 2nd November so will let you know. I am definitely not going to accept the Zostavax jab.
Quite simply: NO! Apart from anything else - the manufacturers of Zostavax admit it can cause PMR! They aren't entirely sure about Shingrix but it is far more effective than the Zostavax. If I'm risking a flare of PMR I at least want it in response to a more effect vax for shingles!
I cannot believe that the vaccination centre is holding two types of vaccine if they are not offering the option to you. Can you find out directly from someone else at the centre rather than the nurse you talked to and tell them you cannot have a live version? My surgery only has the live vaccine so they have noted I will have the non-live version when available.
It might not be the particular nurse that I get at the centre but I shall certainly ask the question of why I don’t get a choice and I’ll also tell them that I can’t have the live vaccine. I am in Dundee, Scotland but I think the rules are pretty much the same throughout the UK. I’ll let you know what happens. Thank you for replying. Pat
We live at a retirement complex (not sheltered, privately owned)near Ninewells hospital. I’ll try and find out if the local group are meeting as I would like to get involved.
You are just along the road from Lorna Neill - long time lynchpin of the group, very active in research groups too. She's forgotten more about PMR/GCA than many doctors know! Coincidentally. our husbands worked together at N/W but it was through PMRGCA that we got to know each other.
Yes it was. I read all the info and they meet the third Tuesday of the month so I shall go along on the 15th November. Thanks for pointing me in the right direction. Pat
Thank you, Lorna, I have phoned the helpline and the nice lady is sending me an information pack. Also I looked at the information on the link that PMRpro sent me and I shall go to the next meeting on 15th November. Perhaps I might meet you there. Regards, Pat
Adding to the chorus. Do not accept Zostavax (I know you've already decided not to). In Canada live vaccine is available for persons who are "immunocompetent" (not us!) or when Shingrix is unavailable, but the the recombinant vaccine (Shingrix) is recommended for all. Shingrix is not only safer, as far as we know, for immunocompromised, but it is a more effective vaccine, providing a significantly higher and longer lasting level of protection especially in older people.
Thank you for your comments which are helpful, as you say I have already decided not to take the live shingles virus. Willlet you know how I get on. Pat
I have recently had my second shingles jab. When I was at the surgery the nurse had checked my file, found I was immunocpromised and said she had to give me the dead virus in 2 doses 2 months apart
So much interesting info on here. I'm in Oz and due for the shingles vaccine. I don't think I get a choice if I want the free one. $250 a pop for the Shingrix as far as I can find but will check with GP when I see her in a couple of weeks.I've been waiting until I get off the pred and MTX.
That is the unfortunate thing, the price. No shingles vaccine is covered in my jurisdiction, but private insurance covered partof the cost for us. If you can afford it it is definitely worth it. By the way the second dose can be given anytime between two and six months, or even beyond if the sixth month is missed. Here they suggest four months which is what my husband had. I ended up being closer to five or six months because of course first covid booster got in the way! I had to wait a month between the two vaccines. It does spread the cost out a bit.
I’m having mine in approximately one hour’s time. I insisted on the Shingrix, though the receptionist assured me that neither vaccine was live, but agreed to double-check. Needless, to say, she had made a mistake.
Episode 2. I arrived at the surgery, only to see Zostavax on the nurse’s desk. She was looking through my notes. “I can’t have that!” said I and, to her great credit, the nurse replied, “No, I was just looking through your notes and I realised that.” Luckily, they did have a dose of Shingrix at the surgery, so I was able to have my jab. This, despite the fact that I had specified to the receptionist that I could not have the live vaccine! Still, all was well because I knew what I was talking about and the lovely, conscientious nurse had her wits about her.
Excellent!!! I was under the impression the Shingrix vaccine was to be specifically ordered for patients who were entitled to it. Glad the nurse was more awake than the receptionist!
hi - as someone who had a horrendous bout of shingles and I have neuropathic pain and meds to this day. I was hospitalised and it was agony, from toes to waist - I would metaphorically jump for a vaccine. With me, it can coMe back. I have had it 3 times! Take good care -it’s just awful. With all best wishes B
Seems there is a lot of variation in knowledge about this in the UK depending on where you live. My surgery in Salisbury contacted me to book a shingles vaccine and had absolutely no problem in booking me in for the Shingrix, as advised for people with PMR.
My Dr said seeing as I was down to 1mg of pred. perhaps i could wait so as to not need the Shingrix so he is obviously aware of the difference, so I agreed, however now i am wondering if I will actually manage to get off the Pred just that easy to oblige, or anyway how long the pred will stay in my system. I figured he was probably trying to save the practice money as i had heard it was expensive. Seeing as he never wanted to prescribe Adcal-D3, thought I could buy it myself when I asked. I assured him i could have had i known it was required. It took the Rhumy nurse to notice its absence and request it as it didn't come in my initial pack. Still AA did so perhaps he decided I didn't need it.
I had first covid booster just about the time I planned to get second Shingrix. Was advised to wait one month. By the way you can have the second Shingrix vaccination anytime between two and six months after the first (this is in the manufacturer's info, and here they suggest four months). Not sure why the UK seems so insistent on two months!
• Shingrix is given as an injection into a muscle (usually in the upper arm).
• You will receive 2 injections 2 months apart. If flexibility in the vaccination schedule is necessary, the second dose can be administered between 2 and 6 months after the first dose. Based on your medical condition, your doctor may also recommend that you receive the second injection 1 month after the first injection.
• You will be informed when you should come back for the second dose of Shingrix.
It's probably an administrative decision, perhaps more efficient, especially as it is something provided by your health care system. It's very definitely stated in Shingrix literature (Canadian site), and by the CDC that the second dose is to be given any time between 2 and 6 months after the first, with no indication of preferred interval. Just checked my old diaries and my doses were about six months apart.
However the CDC does have this statement: "For immunocompromised adults, a shorter interval of 1–2 months can be followed if the patient would benefit from completing the series in a shorter period." I would assume that by immunocompromised in this context they mean people who are severely immunocompromised, like transplant recipients, or those on high doses of corticosteroids, but a definition would be helpful!
Actually just thinking that as Zostavax is still available they've already concluded that whoever qualifies for Shingrix does so on the basis of being vulnerable, so I guess in the context of NHS it does make sense!
I think that is one of the reasons Zostavax is not recommended for us. PMR is a known side effect. I do not know if there is anything similar with Shingrix, but so far it seems not. Of course any vaccine, like any illness or trauma, or stress, can be the final straw that leads to PMR. I hope your PMR behaves itself and you are getting better?
Because I am on Methotrexate I can't have the live vaccine so I am to have the Shingrix instead. My GP has ordered it in and will administer it when it has arrived. It had to be checked with the hospital first.
it was the same for me. I’m on methotrexate and everyone in the surgery knew I had to have the dead vaccine. It makes me realise how lucky I am with my doctor and surgery. They are so efficient.
I should have had my shingles jab 3 years ago but because I was on high dosage steroids for GCA I was advised not to have it. Earlier this year I was offered a modified shingles vaccination. This was given in 2 stages and I had no reaction at all. I'm sorry I cannot remember the name of the vaccination but maybe you could ask your doctor.
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