Shingles and PMR

[Louisa1840]

Hi All, after a couple of days of feeling quite ordinary, I developed a horrible rash which was raised and blistered . My immediate thought was Shingles. I was lucky enough to get an appointment when I booked this morning for today! Yes I know how lucky I am living in Tasmania and that some of you in UK have to wait 3 weeks! Sure enough it is Shingles....

My question is do I follow sick day rules now or stay where I am on 4.5? I am feeling very ordinary. ........

BUT

I have just had an immediate boost as my grandchildren (age 4 & 5) have visited. My bed has been decorated . I have been brought a glass of water . A soft toy (resembling Dogger) has been brought "to keep an eye on me"I have a jam jar full of flowers and I have earrings in plus my lips have been made up with bright red 👄! Who could not feel better?

[DorsetLady PMRGCAuk volunteer]

Have you been prescribed an anti viral drug? Like valaciclovir and famciclovir….you should have….but it does need to be started within first 3 days to be really effective.

Unless you feel really ill there’s probably no need for SDR, so see how you get on… obviously if you do feel really crook then might be sensible, but hopefully won’t be necessary..

Expect you’ve seen this -

mydr.com.au/pain/shingles-e....

Hope it soon goes..🌸

[Louisa1840 in reply to DorsetLady]

Thanks DL Yes I have been prescribed valaciclovir and I am to take the 3 daily doses today (I picked it up at 1 p.m.) to catch up. I'm interested to hear you use the expression "really crook" . That's pure "Strine"! Have you visited Australia or has it caught on in UK? Thanks for the link, I hadn't seen it but I will now.......

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

Well known saying to me and probably a lot in UK plus have daughter & family in NZ ..

[PMRpro Ambassador in reply to Louisa1840]

Neighbours and H&A have a lot to answer for!!! Especially the rising intonation that makes every sentence sound like a question - drives me up the wall ...

[Louisa1840 in reply to PMRpro]

You get used to it but, no, I am not a fan......

[darkred in reply to DorsetLady]

Please tell me what SDR is. Thank you in advance.

[DorsetLady PMRGCAuk volunteer in reply to darkred]

Sick Day Rules used when you are on Pred and feeling unwell with another illness/virus etc -

This is just one version from UK- most countries have similar -

medicinehealth.leeds.ac.uk/...

US advice-

adrenalinsufficiency.org/wh...

[darkred in reply to DorsetLady]

🌝 Very helpful. Thanks!

[PMRpro Ambassador]

Have they given you an antiviral? That does calm things down relatively quickly usually. If they haven't - ask, you need it in the first few days for it to be worth it.

Not sure about SDRs if all you can say is you feel rather ordinary - is that as bad as feeling all unnecessary? Are you rubbish enough to NEED to stay in bed? In which case, maybe SDRs are justifiable.

Wonder what  SnazzyD - our resident nurse thinks!

And get well soon!

[Louisa1840 in reply to PMRpro]

Yes (see my answer to DL) and No, I don't need to stay in bed . The arrival of my grandchildren coincided with my daily rest which I need to have to get through the day. I don't want to have to increase pred having got down to below 5 for the second time.

Not sure about the difference between feeling ordinary and unnecessary - I never feel the latter and rarely the former! I think "feeling ordinary" is the delightfully Australian tendency to understate!

Thank you for your get well wishes and I await Snazzy D's thoughts.....

[PMRpro Ambassador in reply to Louisa1840]

"I came over all unnecessary" is a delightful old-fashioned version of "I feel rather strange" I suppose you'd say. Was in a bit of a hurry - but wanted to say what a lovely mix of colloquial words for the same sort of thing!

[SnazzyD]

Hello there. As a nurse I never cared for anyone with this type of conundrum. However, from a personal side as a rule of thumb I didn’t do sickday rules if I was coping on a normal day adrenally speaking, at the first sight of trouble. This was unless it was a really big one, or a good day was a struggle already. If it were me, I’d wait and see. With shingles I’ve usually felt like I’m coming down with something and somewhat half baked but not needed to call out the cavalry. I would draw the line if I had relentless neurological pain and was starting to feel quite weak and especially if I had other symptoms of adrenal insufficiency. Even then I’d try a couple of extra mg to see first rather than double 4.5mg unless you are talking about a flare. At some point we have to trust our bodies to allow them to work without forcing the issue with a knee jerk intervention. Again, I mean from the point of view of trying to get a process to work again.

However, this is coming from someone who has been too optimistic, too ill or stubborn to do sickday rules and ended up with a real crisis once and a few very near misses. So maybe I’m the last person to listen to! I know my triggers are sustained acute pain and prolonged fevers above 39C.

I would try to get antivirals if there is still time.

[Louisa1840 in reply to SnazzyD]

Thank you Snazzy Yes as I mentioned, I managed to get into the doctor yesterday I.e the same day the rash erupted. I knew it was important to get the antivirals into my system quickly

I do feel absolutely !@#& but no I don't want to do SDR unless I absolutely have to

This is the second time I have managed to get below 5 mgs and as you say we have to trust that our own systems will come to the party at some point!

Thanks, as ever for your sound advice.

[PMRpro Ambassador in reply to Louisa1840]

Yes - but "at some point" may not be at the point you are sinking below the waves this week - and the week after next will be be a bit late ... SDRs are only temporary after all.

[Louisa1840 in reply to PMRpro]

So are you saying you think I should adopt SDR's PRO? I know it's up to me but when you're feeling really low you just want someone else to make the decisions!!

[PMRpro Ambassador in reply to Louisa1840]

If you are feeling REALLY unwell, yes, See Snazzy's admission!!

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

Yes….

[SheffieldJane]

Oh Louisa it would be very hard to beat that treatment wow! Aren’t children magical?

Sorry about Shingles. I’ve got the jab soon which I was dreading adding to the mix.

I see that DorsetLady has got you for the rest.xx + Snazzy + PMRPro of course. ⭐️

[Thelmarina in reply to SheffieldJane]

I know we’re all different but I found the shingles jabs fine - and infinitely preferable to shingles itself which I had previously. I hope it works the same for you - you do have a lot on your plate 👍xx

[Louisa1840 in reply to Thelmarina]

Thank you Thelmarina. I had read on this site that the Shingles jab was not advised for people with PMR. But PMRPRO says that the new one Shingrix which was only available since last October is fine. Too late for me but never mind..........I'll get it when it's time for a top up.

[Thelmarina in reply to Louisa1840]

Go for it. Yes, we can’t have live vaccines but Shingrix is nicely deceased. We live in remarkable medical times! 😀

[Leafsong66]

Just adding my love and best wishes for your Shingles to vamoosh real quick! Thank you for posting your situation. The learned replies help add to our body of understanding. Praying that your little joy bringers will be a beautiful blessing while you recover.

[Louisa1840 in reply to Leafsong66]

Thank you, Leafsong. Where would we be without the freely given advice of the experts on this wonderful forum? Yes, my little joy bringers are such a blessing....

[Marypatmorgan]

Not sure if it will be of interest but when I recently had my appointment with ophthalmology - I have GCA & PMR - he asked if I’d had shingles and if so on what side.

Turns out where my head, eye, neck pain started for GCA is the side I got the shingles blisters on. He was quite excited (of course I couldn’t share his excitement 🙄) but he obviously feels there is a link.

I know my comment won’t help you but thought you may like to know.

Best wishes!

[Louisa1840 in reply to Marypatmorgan]

Thank you, I am always excited by these, possibly connected, facts. Yes, my shingles is on my right side which always seems to be the side little problems occur (slight nosebleeds, migraines). We definitely have two different sides. I daresay, in the not too distant future, this will all become (if it hasn't already?) proven and explained.

[PMRpro Ambassador in reply to Marypatmorgan]

There has been some speculation that the zoster virus underlies GCA - one study found it present in the biopsies of GCA patients. But I think it is more correlation than causation since pretty much all our generation will have had chicken pox and are likely to have the virus present somewhere. And then, having shingles could well be part of the trigger for GCA.

However this discusses it

frontiersin.org/journals/im...

It is from a fairly active PMR/GCA group in the Netherlands so pretty reliable.

[Louisa1840 in reply to PMRpro]

Interesting isn't it that papers/studies from certain countries carry more credibility than others. Netherlands does it for me.....

I believe I have read that PMR can be triggered by having a virus? So, so much we have yet to find out about this fascinating subject of health and the human response.......

I'm still feeling very weak and fatigued from the shingles but, so far have resisted doing SDR. I have however, cancelled all commitments (MC for a concert, photo shoot for an ad) and feel mightily relieved for having done so.

[PMRpro Ambassador in reply to Louisa1840]

I've been to meetings with Elizabeth B and Sarah Mackie rates her and her team.

ANY virus can trigger PMR - together with a load of other events.