Now on low dose prednisolone (1mg) after 2 1/2 years feeling very pleased with myself. Had the Covid jab 3 weeks ago, then a blistery rash for 2 weeks and diagnosed (by photos) today as having shingles! Put on 800 mg aciclovir X 5 per day.
Not so pleased now. Is shingles common within the PMR club members?
Oh poor you! I wonder what brought that on? It seems to come up on the forum quite often, sometimes in relation to the live vaccine that we mustn’t have. I have always associated it with being run down or coming into contact with Chicken Pox. There is nothing wrong with feeling pleased with yourself. I hope the anti- virals work quickly. Take care of yourself.
I read somewhere that one in four people will get shingles at some time in their lives. I know one person who has had it three times.
I was diagnosed with GCA/PMR in November 2019. I got shingles November 2020. I was on prednisone and Actemra. I feel for you, my were so painful and lasted one month.
I am totally convinced that Shingles triggered my initial GCA/ LVV 4 years ago. Unfortunately, I didn’t manage to get the vaccine when I turned 70 as I had started on Tocilizumab 3 weeks earlier ( and the NHS here in the UK only offers a live vaccine; immuno-compromised / suppressed people should be offered Shingrix (non-live) vaccine but it’s deemed too expensive).
I have had 2 further bouts of Shingles in the past couple of years, but recognise the symptoms very quickly now, and my GP is quick to prescribe Aciclovir, which clears it up with an 8 day course (5 days may not be enough).
Aciclovir prevents the virus replication but it would be preferable to get a vaccine to then have the antibodies to fight off future bouts. I am currently looking into getting Shingrix (non-live) Shingles vaccinations privately once I am forced to stop taking Tocilizumab. It’s expensive (over £500 for the two jabs), but I believe another bout of Shingles could trigger a GCA/ LVV relapse.
"but it’s deemed too expensive" - possibly but there is also an availability problem as the manufacturers can't produce enough to supply the volumes required for all the European state-funded healthcare systems who would have to roll it out to millions quite quickly.
Hopefully, the amazing progress made with vaccine development for Covid will spill over into better/ quicker vaccines being developed for lots of other diseases (including Shingles). Now there has been “ proof of concept” for all of these new vaccine platforms and technologies, it all looks really hopeful.
Even more - the sudden interest in Long Covid SHOULD result in better provision for all chronic illnesses. It is, when all is said and done, ME/CFS triggered by a viral infection - nothing new ...
Absolutely! There was a very good Horizon programme on BBC tv last week, by the Doctor twins, the Van Tullekens, discussing long Covid and other conditions ( such as M.E.). Worth a watch on I-player if you have the time.
bbc.co.uk/iplayer/episode/m...
Can't get iplayer outside the UK - shame. Didn't notice it at the time - I can get the Beeb but only live or if I record it on the app we subscribe to.
I think there are sneaky ways round this- you can use a VPN to access BBC i -player ( if Google is to be believed).
They were offering them around Brexit time but free ones worry me, and pay ones can be expensive. And frankly - not sure the Beeb is worth much these days 
I tend to agree ( though Richard Osman’s House of Games has helped keep us sane this past year) xx
Am enjoying Forensics - the real CSI!
Me too- science is amazing.
If I were starting out now - I could fancy forensics ...
Yes- it seems such a waste of all those years of training, experience and expertise, and just when you feel you are getting really accomplished..... you’re put out to grass! Don’t you feel you still have so much to offer?
No - I really do like retirement! Too much admin in everything these days - my paramedic daughter goes nuts about the paperwork - though at least it is mostly on a tablet now.
Yes, most days I feel the same, but occasionally I really miss the buzz of a new discovery. Being isolated for so long this past year has tended to put a rosy glow on what life used to be like. I certainly don’t miss all those early mornings, long working days and hideous commutes!
Hi.
I too believe shingles started my GCA, I had ocular shingles 3 times before getting GCA. I’m sure I’ve read something about this but I can’t find it now.
The first time I got shingles was very bad, it covered my eye, eyebrow and head, it took ages for it to clear up, the next time I got it just affected my eye, that was so painful, the third time was when I was in hospital having a operation, I knew the symptoms and was treated with aciclover immediately.
I’m convinced there is a connection.
I was just reading that article you mentioned.. interesting though I'm sure it doesn't apply to everyone. just today it seems to apply to me though..maybe it won't tomorrow...
I think this is the article oatext.com/pdf/CMR-2-115.pdf
There are people who have developed shingles - but I think it is probably more associated with anything that has a poke at the immune system. There is an increased risk of it happening if you get the older shingles vaccine, don't know about the newer one, and the older shingles vaccine is also associated with PMR developing. You can only develop shingles if you have previously had chicken pox and then the immune system pokes the dormant virus in the nerve endings and it wakes up, Theoretically it is a bit late for the acyclovir - should be used in the first 48 hours of the rash but it is always worth a try,.
Yes, thanks. Unfortunately it was misdiagnosed the first time so here we are again (took 6 weeks to get my PMR diagnosed). The sweet joys of the PMR journey......
Six weeks? That's not bad at all in the general scheme of things!!
I'm glad you've got a sense of humour about it. As my regular GP said when he finally returned from his sabbatical "just checked your records, your results were quite high. I bet that hurt, didn't it?😎
My results weren't high, that was the problem and it wasnt diagnosed for 5 years - and it was me that worked out what it might be! 15mg pred at 10.15am resulted in a return to normal mobility by 4pm!
But your GP sounds OK even if he did naff off on holiday when required! (I know what sabbatical means ...)
I had shingles just before my PMR started, not sure if related but they are both autoimmune issues.
Would be interested to hear if others have had similar.
Shingles isn't an autoimmune disorder - it is possibly more common in people with autoimmune disorders and is more of a problem for them. It is a reawakening of dormant virus in the nerve endings after having had chicken pox - so in some ways a relapse of CP.
Have you any trustworthy information about links between shingles and Vitamins D and B12 deficiencies?
Not that I know of - but a Chinese study found patients with post-herpetic nerve pain had lower vit D levels - but it is obviously one of the umpteen Chinese students on one paper to add to their CVs! "Here is a set of data, write a paper using it ..."
Low vit D and low B12 both contribute to nerve pain so it is logical to wonder if supplements of both might help.
Whether there is a link before the shingles develops I don't know - though there is anecdotal discussion about the role of micronutrients in reducing the risk with herpes zoster which concludes a good diet with lots of fruit an veg is important. But that wouldn't provide a lot of either vit D or B group vits.
I got shingles 6 months after being diagnosed with PMR. Once you’ve had chicken pox, the shingles virus lays dormant in your system. Suppressing your immune system with steroids can activate the dormant virus.....at least that’s how it was explained to me. Shingles is not all that uncommon while on steroids.
I got a case of shingles a year into PMR. I suppose our system is a weakened. Good luck...my case was on my face and relatively mild.
I have shingles now. A month in and pain is gone, rash fading and just a bit of itchiness to deal with. Pain was excruciating. Fortunately I got in to see my GP same day that rash appeared as I knew it was shingles and it was important to get the antiviral meds as soon as possible. I hope you haven’t suffered too much. PMR 3 years 5 mg pred.
Thanks for all the replies. Shingles now subsided and have gained something called Pompholyx which makes your hands look like you have a bit part in a zombie movie. Very stingy and itchy and a 'b' nuisance.Begining to think that coming off the preds was not such a good idea.
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PMR, new hip, osteopenia and now statins?
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NEW RHEUMY STATES IM TO YOUNG HAVE PMR,NOW WHAT?
