Shingles after radiotherapy 🙄

[Moomin8]

Hi Peeps,

I hope this post finds you as well as you can be today🫠

I seem to have acquired a new skill: shingles!

I am immunosuppressed (have RA), have had an operation for breast cancer and radiotherapy back in May to July this year. Yes, I certainly know how to party! 🥳

I have been quite run down these past few weeks, which culminated in a course of Doxycycline for sinusitis a week ago. I was presuming that my tiredness was just my general recovery from everything having had to stop all my RA meds for 4 months didn't help matters. Then this rash appeared. It is on the top of my left breast/chest area. Rashes and soreness can be as a consequence of radiotherapy. It feels sort of bruised over the area, which can be costochondritis, which my RA consultant thought my soreness was, when I saw her a few weeks back. But now there is a rash 🙄 I was umming and ahring about even wasting my GP's time, but I gave myself a good talking to and went. I am going back today to see if I need antivirals. I have left a voice message on my clinical nurse's answerphone, to ask about whether I can have antivirals, and whether they can allow me to have the shingles vaccine once everything clears. I have 2 injections: 15mg Metoject and Tocilizumab.

Has anyone experienced anything similar?

Any top tips?

I haven't come out with blisters yet, I am hoping it's been caught early enough. The tiredness has floored me though.

Oh, and BTW - I work in a primary school. I'm back in on Monday. Should I be in regarding being contagious?

*Update:

I just had a call from my lovely clinical nurse. She said that I can have antivirals, if needed. She also said to ask for the non-live shingles vaccine. I asked if she could request it, but she said it was at my GP's discretion, but she would advise it.

google.com/url?sa=t&source=...

However, I've just looked up about the Shingles vaccine. I think I am eligible for it 🤔 (see photo above)

**Update:

I have just got back from my GP. He's given me antivirals valacyclovir) because my rash is "suspicious ". I'll have to pick them up tomorrow, as they didn't have them in.

[medway-lady]

If you’re under age for the vaccination get your RA team to write to GP and request it. I had it after awful Shingles but sadly it’s only about 74% effective GP said so I’ve had it again since. But the antivirals work well. I hope you’re feeling better soon. I found that Deep Freeze helped with the pain after the scabs healed.

[Madmusiclover in reply to medway-lady]

Immunosuppression qualifies for shingrix under age.

[medway-lady in reply to Madmusiclover]

I think it’s not a blanket policy. I was underage on AZA and Etanercept had been hospitalised with Shingles and they said no hence consultant instructed GP to do it. It might have changed recently but I think it depends on medications and immune status as it might refer mostly to transplant immune drugs not RA.

[Madmusiclover in reply to medway-lady]

It depends on if your drugs at the right dose are on ‘the list’. My JAK was. Practice Nurse can advise. Even then there is wriggle room for surgeries I think. My friend manages a GP practice. They are quite generous in their interpretation!

[medway-lady in reply to Madmusiclover]

I’ve had them now but our surgery quoted “Green Book” that usually saves them money. Like most GPs I think these days they like “cost effective” decisions, I’m not sure that’s always in the patients best interest as they really didn’t like my Nephrologist ordering them to prescibe a branded medication as the generic one upset my tummy.

[Madmusiclover in reply to medway-lady]

Yes green book. That’s ’the list’.

[SingingJay]

What a nightmare. I’m so sorry to hear you’re going through yet another mill! I hope you’ve avoided the worst of the shingles and get better soon.

[Madmusiclover]

You are! Have it. I got facial shingles. Utterly dreadful.

[wilbertjellyfish]

Gosh, no wonder you got shingles when you were under so much pressure from everything. You might need to be careful in school if the rash is visible you could give a child chicken pox..... however you need to rest to get better. Shingles can get worse if you don't be careful and allow your body to recover. Taking a week off now could prevent you needing months off later.

[Moomin8 in reply to wilbertjellyfish]

Hmmm... it's a worry either way. It's on my chest, which I can keep covered. My friend was saying that she went into school with it, which is a worry again; I'm thinking that maybe I should go in too. But then, I should give myself a few days to start to recover. We are overdue Oftsted, which means I'd let the side down.... all such a worry.

[wilbertjellyfish in reply to Moomin8]

I fully understand. I'm self employed and taking time to recover really isn't easy. However, a neighbour of ours had shingles a few years ago and it took him ages (months and months) to recover and he's still not ok. He's a farmer so definitely didn't rest and recover. We need to be kind to ourselves but it's possibly the hardest part.

[medway-lady in reply to Moomin8]

Be warned Shingles is not always fleeting so give yourself time. I know it's hard but better off with a few days off rather than like me a few days in hospital, then months in pain as I thought it'll go soon. But it didn't probably because I carried on. It's horrid so I'm sorry but your health is more important than Oftsted. x

[ABwn]

Good luck. Keeping everything crossed for you.

[Gymcactus]

I had the antivirals they worked very quickly, mine was around my eye so had to be very careful.

[Leics]

Oh dear you poor thing these things come to try us don’t they ? In my experience GP’s make all these kind of decisions and don’t always get it right. For instance my hubby who doesn’t have RA or any autoimmune disease, had pneumonia two years on the trot and was hospitalised the 2nd time. When he recovered we begged our GP to give him the pneumonia jab but they had a chat and said no. It took a very stern letter from a pneumonia consultant before they finally said ok. It was a massive relief for us because they don’t know why but he’s always going to be susceptible to getting it again even though he’s generally fit and healthy and 61 we are pretty sure that as he had very bad reactions to Covid vaccines that is the reason he’s now susceptible which is very unfortunate. If it was me I wouldn’t take no for an answer with GP and get the shingles vaccine if you feel it’s right for you.