shingles and pred

[Twopies]

I have a rather horrific case of shingles, day 13. Misdiagnosed day 1, started acyclovir day 4. No sleep, no clothes on top, etc. doc had me up pred as follows: 15 mg for 3 days, 10 mg for 3 days, then 5 mg for 3 days, then back to regular dose (dsns 3 1/2). Been so very ill last 3 days, weak, can barely walk, loose stool, etc. thought I was having a stroke this morning…or adrenal crisis. Could barely speak, heart rate up, sweating, etc. called ambulance, 6 guys came. Checked me out good…took forever, very thorough. everything perfect except blood pressure a little high (scared out of my wits). They said I could go to er…but what’s the use? Here’s my question: what do I do about my pred dose? I’ve already done the increased dose as prescribed by doc. Advice welcome. Thank you.

[SnazzyD]

How are you feeling now compared to this morning?

Sick day rules again might be worth a try just to see if these symptoms are adrenal insufficiency or the shingles itself.

healthunlocked.com/pmrgcauk....

Is there any chance you could also be dehydrated too?

[Twopies in reply to SnazzyD]

not so bad as I did but still weak and wobbly. Feels like I’ve been poisoned. Ok to up to 10 then per sick day rules?

[SnazzyD in reply to Twopies]

It is good you feel improved. It sounds as though like you are ill enough to justify sick day rules as you are quite unwell and your symptoms could be adrenal insufficiency. If you feel much better on 10mg you have your answer. If that is concerning, try doubling your 3.5mg. You do need to let your prescriber know what’s going on if that’s possible. If you worsen again, do seek medical advice again.

[PMRpro Ambassador]

I agree with Snazzy - I think you need more pred for longer because the healing/recovery process is still going on.

[Twopies in reply to PMRpro]

Much thanks to you and snazzy. Done and done.

[PMRpro Ambassador in reply to Twopies]

And get well soon - I've had one of my shingles jabs so hope I never experience it like you are having

[August7]

Hope you feel better soon, sounds horrible for you. Just wondering why they left Aciclovir to D.4 as believe guidelines say issue within 72 hours to be effective. Lots of good advice above so just sending all good wishes for a speedy recovery ☺️

[Twopies in reply to August7]

It’s when I saw my gp. Urgent care on day 1 (Sunday), said it was a contact dermatitis. Gave me itch meds (it wasn’t itching,). Told me to call my dermi next day if not better. Dermi on maternity leave, told me to call g.p. He couldn’t see me till day 4. When I saw him, I said my dermatitis is spreading. Nope. Shingles. I was stunned,

I upped my pred to 10 and got some sleep for the first time. I’m thinking yesterday was the adrenal stuff, gonna stay at 10 mg for the 10 days. Thanks for your concern, much appreciated.

[Alebeau]

I recently had shingles as well and found the anti viral medication made me so achy among other things that I stopped taking it

I chose to suffer the shingles without any antiviral (valacyclovir) medication except for pregabalin which was not so bad for side effects.

I did not adjust my prednisone in any way.

Took about 5 weeks of suffering but now am feeling fine except for itching where the rash was.

I never expected to get shingles as I had received the ShingRix shots but I was told the steroids probably negated the protection of the shots.

[HeronNS in reply to Alebeau]

Sounds unpleasant but maybe the vaccine prevented a worse case? For context, given Shingrix is considered to be at least 90% effective, can you remember what your pred dose was when you got Shingrix vax? And, if you don't mind sharing, no need to be specific, had you recently had an immune system damaging infection (e.g. covid, there are others as well, like Epstein Barr, measles, etc)? Hope the final symptoms fade away quickly.🍀

[Alebeau in reply to HeronNS]

No other diseases, PMR came out of nowhere at age 70

I was at 12 mg prednisone when I got the ShingRix vax

[HeronNS in reply to Alebeau]

Interesting. Thanks for sharing. I suppose pred dose above 10 could have been the problem. If you'd been at a really low dose I'd have been worried. I know I was below 10 but not as low as I would like to have been at that stage so I hope my shot worked! Mind you, I had to be tested before getting Shingrix because I always thought I'd never had chicken pox. Apparently at some time I must have had an asymptomatic case.

[Alebeau in reply to HeronNS]

Best of luck 🤞

[PMRpro Ambassador in reply to Alebeau]

The vax doesn't STOP shingles developing - just makes it less likely and less bad. And the vaccine is recommended despite being on pred.

[darkred in reply to Alebeau]

Amazing report. Thank you for sharing. Much like PMR in that shingles can affect us in different ways. I wish my doctor had given me pregabalin. Maybe that would have eased the suffering. Interesting that you had received the ShingRix shots, but the steroids maybe negated the protection.

I had been on pred for 9 months when I got shingles. Several extremely stressful events preceded the attack of shingles. I think the stress may have contributed greatly to the shingles attack.

[Alebeau in reply to darkred]

That’s what my doctor told me

I was very disappointed as she never cautioned me that this could happen even with the double ShingRix shots

[darkred in reply to Alebeau]

I feel your pain! So sorry you were misdiagnosed for so long! I can imagine your disappointment and surprise that you could get shingles even with the double Shingrix shots!!!

[Sandmason]

I had a very mild case of shingles on 20mg pred, during the first few weeks of treatment. I had the live vax years ago but not the new double one. Afraid to get any vax while on pred.

[PMRpro Ambassador in reply to Sandmason]

Shingrix is safe when on pred.

[HeronNS in reply to Sandmason]

Possibly correlation not causation but I was able to taper off pred after Shingrix, following a frustrating struggle previously to taper back to my former lowest dose when I had a major flare.

[darkred in reply to HeronNS]

Amazing stroke of luck. Not the shingles, but the luck with your taper. Something good coming after the bad.

[HeronNS in reply to darkred]

Not me with the shingles, but yes I've been lucky because I never even knew I'd had chicken pox! Needed to be tested before having the Shingrix vaccine.