Shingles from HELL

[ShinglesHell]

Hi all, hoping someone may have some help or advise as feeling very alone with this. I first got shingles in Dec 2019, just a few small blisters above my left eye with some eyelid swelling, then had it again in the same area but less severe in March 2020. Both times not nice but healed pretty well with antivirals.

Flash forward to (Feb) 2021 I get another outbreak again over the left eye/side of the forehead, felt mild again took antivirals, maybe didn't rest as much as previous times. Literally, a couple of weeks later (March 2021) shingles break out again but this time over the RIGHT eye!! There were lots of blisters this time even down to my chin and with severe ear and neck ache. Took antivirals again, at this point I had always taken the 5 x day 7-day acyclovir. I start seeing scars :( lots of little crater type ones from where the little blisters are erupting over my face. Flash forward to another few weeks (April 2021) it feels like I'm getting them again... but think oh no maybe it is just PHN (post neuralgia thing), it CAN'T be shingles again, call GP for meds just in case but then notice lots of dried up blisters so it was too late but I did have it again after all...

Then flash forward to now the last week or so (now in May 2021) complete horror story, I get it again but this time on my tongue!! even few blisters on my gums, and by my ears and neck, hearing affected, tongue bleeding from sores knocked. I believe when in the palette it is referred to as Ramsay Hunt syndrome. I am on the last day of antivirals (this time requested famciclovir instead 3 x day) and still breaking out in blisters on my face despite a week on meds, can feel it on the scalp too, the worst thing is it is for certain bilateral this last time which normally can only happen if someone has weak immune system.

Doctors ordered blood tests to look at HIV not back yet (but had test last year after shingles twice and was neg) and for immunoglobulins (back normal I believe) and for ESR (my ESR was elevated it was 27 should be less than 20), otherwise no flags.

They have also done a swab to send to the infectious diseases dept at the local hospital.

I'm so upset and worried. Has anyone got any thoughts on why all this is happening to me ongoing 4 x shingles since Feb/what I should do or ask of GP further? Surely AINBU to want more help from them over this? I am freaking out with this shifting dermatomes in this way and just not going.

Thanks in advance

If it helps I am 38, female and a single mum to 2 kids.

thanks @Rubytinsleslippers gp out of hours finally called, would not see me despite how I am, said "nothing more they can do" and also won't prescribe more antivirals as had so many courses in short space of time and I am just to stay how I am with it spreading to other areas and eye swelling, he just kept saying "very unusual" like he did not believe me... wish I was making it all up! lol. So won't keep taking the antivirals I had found and chosen to try myself whilst waiting any more now after what he said, am going to try homeopathic rememedy of Rhus tox in place of any other help offered. Said just to update my GP on Tues and wait til hosp appt on 17th!

Jeez. I hate the ' highly unusual' fob off. Clearly you are unwell. Just because they are not familiar with something does not mean you should be worried or left to fend for yourself for 18 days!!!

You poor thing, you have my hugest sympathy! I had a bad case of shingles in my late teens which I suspect was a reaction to extreme stress. I was petrified of it coming back - it did reappear intermittently when I was stressed and I found that green tea extract dabbed on worked amazingly on stopping any spread of the rash if it started, which was amazing, as nothing else worked. It always stopped it in its tracks. I have no idea why & I don't use homeopathy for literally anything else, but who knows, might be worth a try. I didn't have any antibiotics when I first had it, noone diagnosed anything and I was just left for weeks with the horrendous rash that I couldn't even get wet else it hurt/itched like hell, literally covered my entire body & around my face. I remember it still so I really hope you get to the bottom of it and find how to stop it.

Hi! Sorry, I've not been on here for a few days. I'm horrified to read how you seem to have been abandoned by your doctor despite everything you are going through. I am worried about what the virus is doing to you and don't get why they won't give you anti virals. I was on acyclovir for months after my transplant and I know many people who have been on them for years after their transplant so don't see what the issue is with you taking them for a relatively short term while you are suffering with shingles. I hope you are okay and am thinking of you

@Rubytinsleslippers yes, the "highly unusual" fob off!! like oh so sorry my illness isnt text book ugh

@Polkadots2021sounds awful! will try green tea extract in a face mask I think, thanks

thanks @MyNameIsArthur so sorry to hear of the time you had, hope you are much better now. How much were you on if you dont mind me asking, was it the 800mg x 5 a day or just a supression dose? Called GP before as having tingling in arms and legs on both sides now and got scars on both my eyelids and new blisters left temple today, thought would try one more time with gp surgery. He said he will give me valacyclovir (reluctantly) to get me through to consultant appt, as already had 3 x acyclovir and 1 x famcyclovir to no avail. He also said I can't get my 2nd AZ vaccine tmrw which have already put back twice :/ so feel bit vulnerable. This issue is having a bad impact on me. I will pick up the valacyclovir tmrw and just drink tons of water with it!

The AZ vax has i think 997 reports of zoster after. But then there also a lot of random reports of other stuff.
But shingles does seem to come on in people when infected.
With your worsened asthma too could you have had covid?

I didnt realise there was an age limit for private shingles vax.
I think Boots do them

thanks @HSHorror wow surprised not more as shingles after a lot of vaccines apparently common! I had my shingles just before I got my first dose of AZ to be fair, but it was just two blisters and mild like the time I had had it a year before and went away with antivirals. Got AZ 3 days after finishing antivirals and the whole thing then blew up, switching sides, dermatomes and never been right since. I don't think had Covid as had issues with this chest tightness at start of pandemic and had antibody test as part of research trial last year which was neg.
Yes apparently an age limit on private ones but sometimes they might let you still in special circumstances, but need to be shingles free for a year or something I believe!

If you try green tea it only worked for me dabbed on neat!

thanks @Polkadots2021how did you apply it? :) got some pure matcha green tea powder could mix that with water? or did you stir up green tea leaves or something ha

Hi thank you! I'm doing really well now. I cant remember how much acyclovir I was on. I do have some old paperwork with doses on somewhere. If I find it, I'll let you know. Was probably a suppression dose though. I'm sorry you can't have your second AZ vaccine just yet. What a horrible time for you. Has been a few days now since I was last on here so is there any change in how you are doing?

hi @MyNameIsArthur good to hear you are doing ok now. The gp's relented and put me on antivirals but this time valacyclovir (more potent apparently) as now have shingles on chest too :( a few blisters came up the other day. Not good, and having very strange sensations at night tingling in head legs etc, not long til see infectious diseases on 17/06 I just really hope they can actually do something, or want to. So sad about the AZ I called the chemist where I was booked to get it and she reckons after a 14-week window the whole thing will be ineffective ;/ Got 4 days of antivirals left to take, fingers crossed they help this time.

I notice you had a few days after shingles and it went crazy.
My dp got shingles (first time ever) two weeks after first az. When you look into research stuff there is beginning to be some scientific ‘noise’ about possible link. And it makes sense to an extent.
Agree private vaccination sounds sensible with doctor advice. I’m planning to have it (with advice - I’m late 50s can’t remember if nhs give it to my age) having seen shingles up close.
I am just so sorry op - you’ve really been through the ringer. Support and good luck.

Hi! Thank you. I found out how much acyclovir I was on. It was 500mg per day for the 3 weeks I was in hospital during my transplant and then 1600mg per day for another 13 weeks.

How are you getting on with the valacyclovir? Is it helping? I hope infectious diseases help you get to the bottom of this. It's so unpleasant for you and youve had to cope for so long now. I guess when you are able to, you will be able to get a Pfizer jab if they reckon AZ won't be effective . However Im not convinced they can be that sure about the AZ. Fingers crossed for you! X

Hi @MyNameIsArthur thanks so much for your message & looking that up. Sorry for late reply been a hell of a past week with hospital appt & finally got second az dose at 15 weeks post the 1st one... Saw the infectious diseases consultant in out patient clinic on on Thursday, bit disappointed really she was quite clipped and rude and seemed stressed (clinic running over and suppose she is working through a pandemic) but she did not want to do any more tests to see why I keep getting shingles, just basically put me on 1600mg antivirals for 6-12 months and referring me back to GP. She kept huffing and asking to see photos like didn't believe me, didn't even look at recent scars & lesions, even student doctor in room looked embarrassed! The vala seemed to have helped but have now had it on chest too ... So now had it face, neck, wrist & chest She did give me the go ahead to get 2nd dose of vaccine at least which had fri am, and weirdly have those blood spots again on arm and one bigger one under tongue which had exactly same thing under tongue with first dose of az so I know now for sure it is a vaccine side effect and not cause of any other illness. Have taken a pic and will send to GP on e consult tmrw, more for ref as doubt they'll do anything. So yeah just got to take these 1600mg tabs for a while and hope for the best shingles wise... Bit worried about az and made mistake of reading coronavirus board on here last night think best stay away from that as increasing anxiety and I can't undo jab now. The consultant said "maybe" the first jab had inflamed the shingles but can't say for sure and re whether it will work for covid bearing in mind I've ended up with 15 week gap in-between, she just said no idea as no studies to go on hope you are doing ok!

Hi that's okay. I'm sorry you had a bad experience with the consultant. There is no excuse for rudeness. Even if she is stressed, treating you that way is unprofessional and unkind. At least she has kept you on anti virals. I'm sorry you've now got it on your chest and are getting the blood spots again. I guess with the shingles and the az vaccine, your immune system will be under alot of stress. I hope the antivirals make a big difference and help you get over this nightmare. Yes best avoid the coronavirus board. You've done the right thing getting the vaccine. I got shingles some days after getting my MMR vaccine. I don't know if it was a coincidence but it may have been the shingles appeared when my immune system was already under stress. I'm not allowed the shingles vaccine though. I'm doing okay thank you. Had my haematology appointment on Friday but my blood test results hadn't arrived so they couldn't say either way how things ate but am sure it's all fine. More importantly hope you are okay and getting better

Haven’t read the whole thread but op you have my sympathies. I have recurring meningitis as a result of the varicella virus/herpes zoster/chicken pox/shingles virus.

Best thing for you would be a prophylactic dose of anti virals daily for at least a year. Don’t take brufen at all if you have pain, for some reason this seems to interfere with this specific virus.

Take care

Hi OP hope you're okay now

How are you doing Shinglesfromhell?
Hope you are healing