Waning PMR now shingles. New poster.: Now on low... - PMRGCAuk

PMRGCAuk

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Waning PMR now shingles. New poster.

Pesterfootbridge profile image

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?

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Pesterfootbridge profile image
Pesterfootbridge
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35 Replies
SheffieldJane profile image
SheffieldJane

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.

piglette profile image
piglette

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.

Meggsy profile image
Meggsy in reply topiglette

😱 Oh no! I’m just getting over it now. I would hate to get it again - felt like I was having a lung removed.

piglette profile image
piglette in reply toMeggsy

I remember my grandmother getting it and it was horrendous. Some friends have been luckier, not a nice thing to get for anyone though.

baxternoni profile image
baxternoni

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.

Suzita76 profile image
Suzita76

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.

PMRpro profile image
PMRproAmbassador in reply toSuzita76

"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.

Suzita76 profile image
Suzita76 in reply toPMRpro

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.

PMRpro profile image
PMRproAmbassador in reply toSuzita76

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 ...

Suzita76 profile image
Suzita76 in reply toPMRpro

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...

PMRpro profile image
PMRproAmbassador in reply toSuzita76

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.

Suzita76 profile image
Suzita76 in reply toPMRpro

I think there are sneaky ways round this- you can use a VPN to access BBC i -player ( if Google is to be believed).

PMRpro profile image
PMRproAmbassador in reply toSuzita76

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 ;)

Suzita76 profile image
Suzita76 in reply toPMRpro

I tend to agree ( though Richard Osman’s House of Games has helped keep us sane this past year) xx

PMRpro profile image
PMRproAmbassador in reply toSuzita76

Am enjoying Forensics - the real CSI!

Suzita76 profile image
Suzita76 in reply toPMRpro

Me too- science is amazing.

PMRpro profile image
PMRproAmbassador in reply toSuzita76

If I were starting out now - I could fancy forensics ...

Suzita76 profile image
Suzita76 in reply toPMRpro

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?

PMRpro profile image
PMRproAmbassador in reply toSuzita76

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.

Suzita76 profile image
Suzita76 in reply toPMRpro

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!

2013mayo profile image
2013mayo in reply toSuzita76

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.

Jan_Noack profile image
Jan_Noack in reply to2013mayo

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

PMRpro profile image
PMRproAmbassador

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,.

Pesterfootbridge profile image
Pesterfootbridge in reply toPMRpro

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......

PMRpro profile image
PMRproAmbassador in reply toPesterfootbridge

Six weeks? That's not bad at all in the general scheme of things!!

Pesterfootbridge profile image
Pesterfootbridge in reply toPMRpro

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?😎

PMRpro profile image
PMRproAmbassador in reply toPesterfootbridge

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 ...)

Jamiesons profile image
Jamiesons

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.

PMRpro profile image
PMRproAmbassador in reply toJamiesons

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.

Hildalew profile image
Hildalew in reply toPMRpro

Have you any trustworthy information about links between shingles and Vitamins D and B12 deficiencies?

PMRpro profile image
PMRproAmbassador in reply toHildalew

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.

Zareda profile image
Zareda

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.

Logic profile image
Logic

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.

Meggsy profile image
Meggsy

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.

Pesterfootbridge profile image
Pesterfootbridge

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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