I know this has been discussed several times and is covered in FAQs so I apologise for raising it again.
Last year I was told by my GP practice not to have the shnigels vaccine because it was live and I was considered immunosuppressed being on 5mg of pred. This year they say it's safe for me to have it and in fact they would recommend it even though I am still on 5mg. They now consider it safe for anyone on less than 20mg
I wondered if anyone else has been told similar. Is there actually a recognised dose of pred below which immunosuppression is no longer a problem?
I have PMR and have been on pred 6.5 years never getting below 5mg but ever hopeful
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They said that it was available this year but that I don't qualify and will be fine on the ordinary one.
I have just checked the green book as recommended by Mrsnails, that says short term more than 20mg to qualify or long term more than 10mg. to qualify as immunosuppressed. Difficult to know with us as we are constantly trying to reduce.
Not sure you will “be fine” on live one …. and yes I read that from Green Book.
I declined live one a few years ago-just after my GCA went into remission -and when invited again this year -stated I would only have it provided it was Shingrix because I wasn’t prepared to risk a relapse of GCA. Luckily they agreed.
I tend to agree, I'm uneasy with a live vaccine. Perhaps I should see what the rheumatology dept suggest. As I don't mix often with children I may be safer without a vax, who knows.
long time since we've 'spoken' here, hope you're keeping well and that the cats still occasionally fly
I, too, declined a shingles vaccine two years ago, but asked my GP about it again this year when having my flu jab (Covid jab already done). He asked me to ring Rhuematology who have advised the Shingrix. I agree that checking with the hospital is probably the way to go. K.
this is an interesting discussion. When and if I’m offered a shingles vaccination (70)? I plan to decline the live one on the basis of having g chronic AI illnesses and possible issues……… not enough research……. Covid jabs exacerbated symptoms already….., still, a lot can happen between now and then.
I know I am not severely compromised but as I still have several side effects from pred I can only assume it is still doing it's job. PMR is still around as when I try to reduce even 0.5mg it hits back. In the summer I had to increase to 7mg to cope with having builders in. I will not be risking a live vaccine
I don't even want my flu and Covid booster a the same time - a couple of weeks apart would suit me nicely! I don't know if I can swing that here - not just pred to worry about now but tocilizumab too ...
Weird surgery...Have had one Shingrix..non live for shingles, having second one in week or two....I am also on 5mg....but before the needle goes in...check it`s the NON live one.... Shingrix....I do....
There are two shingles vaccines Zostavax which is not recommended for immunosuppressed patients as it is a live vaccine and Shingrix which is a recombinant vaccine. I had the Shingrix vaccine (which is given in 2 doses) earlier this year with no side effects. Hope this helps
DO NOT TAKE ZOSTAVAX. Apart from the risk of your having live vaccine and no live vaccine is recommended for us, Zostavax is not as effective at preventing shingles, and becomes ever less effective the older the recipient is. I had two Shingrix shots within the past year and reacted quite strongly (mostly fatigue, I slept a lot for a day or two), and since then my PMR symptoms have been much more under control. So I have nothing but good things to say about Shingrix although I expect others will disagree. There is info on line comparing the two vaccines and this is how I know that Shingrix is, generally speaking, a better vaccine for any (elder) age group or whatever the underlying medical conditions one may have.
Was that because it used a new type of adjuvant? And these things don't get tested on the autoimmune. I was reluctant myself. It was only the constant talk of vaccination during covid and also reading how horrible shingles can be that made me change my mind and I'm very glad I did. Counting my bivalent vaccine, in the past 18 months or so I've had 8 vaccinations, and yet to get this year's flu vaccine. Apparently multiple vaccinations do not damage one!
It seems to be the adjuvants that cause the problems because their purpose is to encourage the immune response - and there is always the possibility for the disease process too. But then, anything can do that.
That was my main reason for delaying having a shingles vaccination, once I'd been tested to find out I'd had chicken pox. That and the fact that my husband made very heavy weather out of his reaction to Shingrix! Whatever it did to me and my version of PMR was definitely good thing.
M 71 on pred 15 months currently at 9-10mg. I got the shingles (2nd) and tetanus shots a couple of weeks ago and sore arms plus feeling a little odder than usual for a couple of days were the only repercussions.
Second COVID booster + flu jabs five weeks ago - only problem was some wooziness the day after.
These shots weren’t bad for me, despite my PMR starting up after first COVID jab, but we are all mutants…
Yes I was on 15mg pred and was told I had to have the ordinary shingles vaccine which is live. Even though the leaflet with the pred says no to live vaccines. The nurse said that is what the green book says as I was under 20mg of pred . So I opted not to have it. I did actually find the green book online and my reading of it was not the same as hers. Have a look and see what you think. She says she even consulted the local health board to make sure she was right.
Perhaps PMRPRO and others could look up the green book online and see what they think.
My situation has changed recently as I have been put on Leflunomide. My understanding is that I should definitely not have any kind of live vaccine whilst on it.
Hopefully they will let me have the shingrix vaccine now. I spoke to a different nurse yesterday when I went for my flu jab and she said to make 2 appointments as the shingrix has to be administered over 2 weeks. I won't know if the original nurse will step in and stop it like she did last time until I try.
I don't understand why they are so penicity about a couple of injections. My understanding is that in nhs terms they are not that expensive. I would rather be safe than sorry. Before I had PMR I had a really bad reaction to a yellow fever vaccine which is live. I was really ill. So I do not want to take a chance. But the nurse was adamant that I have the live one or nothing.
There is no justification for preventing you from having the better, more effective and safer vaccine as that is your choice. Do not let them give you Zostavax. Good luck!
I am on a very low dose of pred (recently reduced to 2.5, and going very slowly) and my surgery wants me to have the live vaccine. I’m not keen, and intending to hang on in the hope that I can reduce further before I have it … but I really, really don’t want to develop shingles. Keeping away from children won’t help as I have already had chicken pox. All I seem able to do is🤞
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Counting my bivalent vaccine, in the past 18 months or so I've had 8 vaccinations, and yet to get this year's flu vaccine. Apparently multiple vaccinations do not damage one!
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