Shingrix for immunosuppressed people

[SheffieldJane]

This is the article:

gponline.com/gps-roll-non-l...

Perhaps I have misread it.

[MrsNails]

Thanks for this Article Jane - now added to the Information on Shingles Vaccines in FAQ’s

[Telian]

Thank you Jane. I’m still undecided as worried about any side effects - I’m reacting to prescribed meds more than usual at the moment. 🌺

[SheffieldJane in reply to Telian]

Me too. I have had exactly the same antibiotics for a gum abscess as my husband, he sailed through and I got all the side effects, including sharp stomach pains every day of the course and the runs. As I am trying to hang on to my front tooth I tolerated it. The “All I want for Christmas is my two front teeth” song is ringing hollow.

[Telian in reply to SheffieldJane]

It’s a nightmare for us. I’ve got an eye infection and these drops, I’m allergic to the ones they normally treat with, I’ve reacted to as well…..I tried to persevere but pharmacist said to discontinue…

[SheffieldJane in reply to Telian]

I have had an eye issue for about a year. It’s scary to wake up and be unable to open my eyes. I use preservative free Blepharitis eye wipes, Theolox duo and Carbomer eye gel. Not very potent but they seem to keep it simmering rather than boiling over. I have had a nasal infection since my first test for Covid - over enthusiastic application of the cotton bud. My GP offers nothing because of a blanket ban on antibiotics and they don’t have anything else. I was amazed to get antibiotics from my dentist and hoped they would mop everything up. Alas they didn’t. I look forward to being done with Tocilizumab. I think these are gifts from this drug.

[Telian in reply to SheffieldJane]

As well as very dry I too have Blepharitis and use the eye masks you warm in the microwave - bought from the optician when I had post op cataract check up. For the dry eye I have prescribed preservative free Gel Tears. Now have an infection that is producing a very sticky clear substance this time and prescribed drops caused a foamy white substance to run out of the eye the drops began to sting and lids became itchy so no good for me. Back to GP. I’ve always been sensitive to meds but since GCA and the rest it has worsened. We can only keep plodding on Jane and hope things improve….

[SheffieldJane in reply to Telian]

I always picture you briskly walking, never plodding. Me, sort of dragging, crawling at the moment. I love Christmas though and number 2 daughter, husband and two enormous, strange little boys are coming to stay - Covid -19 willing. 🎄

[Grammy80 in reply to SheffieldJane]

First of all, Jane...I am so excited for you for Christmas. That is wonderful...wonderful.

I recently had the shingles vax discussion with my doctor and he laughed and said.."Let's see, Marilyn, you have four wrenches in the mix, I don't think we will add another." Both vaccines are available and if things were 'quieter' in my body I could have the Shingrix. So, I declined. In 2019 I had the shingles over the right side of my face, in my nose and mouth and it was just plain UGLY looking and feeling!! But no vax for me. 💖 🎄🎋🎄 yippee

[SheffieldJane in reply to Grammy80]

Your glass is always half full. I need lessons. ☺️

[HeronNS in reply to Grammy80]

I wrote about my experience with first Shingrix vaccine at end of July. It was interesting. Had a strong but tolerable reaction, relatively shortlived. And after that I was able to taper my increased-because-of-a-flare pred dose more easily - at least for a few weeks until I stumbled again! I'm actually rather looking forward to the second shot, due anytime after end of November, to see what happens. My reaction was fairly sudden onset extreme tiredness several hours after receiving the vaccine. I had just eaten supper (and I became aware the food was sitting in my stomach not being digested, so next time I will eat a my meal much sooner after the vaccine) and I decided to get ready for bed although it was so early as I thought I would not be able to manage if I waited. I then fell asleep for the entire evening. I think my digestion had started functioning again when I woke up at normal bedtime. Slept through the night, and in the morning was feeling better. I had cancelled a previous commitment for that morning in case I felt wretched and was actually well enough to have gone, although I was grateful to be able to stay quietly at home. No further reaction. My arm was sore, but that's common with any vaccine. I do not remember reacting to any other vaccine ever in my adult life, not even the two Pfizers, other than the arm.

[Grammy80 in reply to HeronNS]

I don't recall any kind of reaction to a vaccine at all. I did get the initial shot of Shingrix in 2018 but a sufficient supply of the second injection never came in. May have been a real blessing since I think undiagnosed GCA came booming in December 2018. As far as THE vaccine I have only felt tired the next day. Welcome sleep~!😴😴

[HeronNS in reply to Grammy80]

Well if you want to get full immunity to shingles I believe a second dose is still valid even after a long gap, if you feel like having one when you are feeling better.

[Grammy80 in reply to SheffieldJane]

You do just fine, Jane...lots to deal with and balance... and you help others~!!!💖

[Telian in reply to SheffieldJane]

I try - it feels like plodding for me…I know the borders are opening

up soon in Oz so WOW to you for a fantastic Christmas - try to pace yourself!!!!

Mine out there are planning their next trip to here. My DIL there needs to get to Cyprus first and as soon as possible as her father is seriously ill and won’t recover unfortunately. It’s a nightmare her not being able to visit him throughout his illness.

I’m so pleased that you’re going to see some of your family at Christmas - sooo exciting for you all.

[Suet3942 in reply to SheffieldJane]

You are going through it Jane aren’t you? Feel for you. When we met at the AGM a few years ago I didn’t dream we’d still be having problems with pmr did you?

[SheffieldJane in reply to Suet3942]

No. I think I was still playing at it Sue. 💜

[Karenjaninaz in reply to SheffieldJane]

I found the best thing for my blepharitis and seems to put it into remission is to take clean hankies, wet with warm salt water, and apply to the eyes until cool.My sister had an intractable case. She was given every eyedrop in the book but just a simple allergic free treatment seems to have cured it in her case. I wonder if the oily glands, around the eyes, seem to get plugged up and inflamed as we get older.

[SheffieldJane in reply to Karenjaninaz]

I will try this Karenjaninaz. It is the kind of remedy that I like. X

[Telian in reply to SheffieldJane]

I use a cotton bud dipped in warm water to clean the lids Jane. Do it as many times as you feel the need - it does work. Still use my Gel Tears at least 4 times daily.

[SheffieldJane in reply to Telian]

Maybe my Blepharitis wipes are too harsh as well as really expensive?

[Telian in reply to SheffieldJane]

Could be, even if they work at first we can start to react later. I had a conversation with my GP yesterday re me reacting badly to antibiotics for an eye infection and she advised me to use the plain water remedy instead of more antibiotics at this stage. So far so good - I do have to remember to do it regularly as I do forget!!!! Hope it helps you. 🌺

[SheffieldJane in reply to Telian]

Thank you Telian, sometimes it is the little things that get you down. X

[Rimmy in reply to SheffieldJane]

Just found this again Jane - have messaged you XX

[pinks33 in reply to Telian]

I had the first of two Shingrix injections a couple of weeks ago. My arm was sore and red for a day or two, otherwise OK. Certainly not as bad as my reaction to the 3rd covid vaccine. That absolutely floored me for a few days, with headaches, chills, fatigue and a crushing pain that travelled up and down my arm. Not looking forward to either the 2nd Shingrix or the 4th covid shots!

[SheffieldJane in reply to pinks33]

I just try to think that the diseases are sooo much worse and plan a duvet day all comfy cosy with radio 4. and paracetamol.

[pinks33 in reply to SheffieldJane]

I hope your eye issues settle soon. You've been really unlucky in the ways that the drugs have affected you. I stopped tocilizumab very recently on the advice of my rheumy. Unlike you I hadn't had any issues with it other than a simmering fear of being immunocompromised. I'd been on it less than a year. I got off pred in August with no adverse symptoms since then. But since stopping tocz I'm a bit paranoid at the slightest hint of a headache in fear of the dreaded relapse. It will take me a while to feel relaxed at being drug free. You become so psychologically dependent on these drugs.

[SheffieldJane in reply to pinks33]

You sound just like me. Good luck 🍀

[Telian in reply to pinks33]

Thanks for the encouragement. I don’t mind a few days off colour. I reacted badly to the 2nd covid jab for about 10 days. I’ll have to feel better than I am before I consider it at the moment.

It’s bound to make you feel anxious about the next jab but it might not happen!!

[Charlie1boy]

Well done Jane. I tried to get the shingrix jab a couple of years ago, but our Practice couldn’t get it. I’d refused the Zostafax thanks to advice on this Forum.Cheers

Paddy

[SheffieldJane]

Shingrex I mean 🤦‍♀️

[HeronNS in reply to SheffieldJane]

Shingrex?

[SheffieldJane]

😂 I give up today. SHRINGRIX!

[USAGCA]

I took Shingrix while on high dose immunosuppressants. I don’t think it worked. I felt no different and I have shingles.

[Jan_Noack in reply to USAGCA]

oh dear, hope it does reduce the severity and itchiness and pain?

[USAGCA in reply to Jan_Noack]

I have no way of knowing, since I have no comparison. The pain is intense.

[Jan_Noack in reply to USAGCA]

sorry to hear and thanks.

[SheffieldJane]

Oh wow USGCA!

[Blackcat1M]

I went for my Shingrix vaccine and,the doctor said I could only have half a dose.After reading the article I can see what she means.

If the vaccine is to be given twice

The nurse would not give me the vaccine until she sees the doctor.

I have taken a photo of this article to show the nurse when she calls me to tell me I can have it.

The nurse said she would not know how to give me half a dose

[SheffieldJane]

That is bizarre! Good luck!

[Temoral]

Thank you for this link Jane...the Shingles vax was going to be one of my next searches...are you also a clairvoyant...😉

[Lacelady]

Thank you Sheffield Jane . I have read the article but it didn’t help me make a decision whether to go ahead or refuse it. I appreciate that the best way forward is to go for the non live vaccine but I am not sure if having any more vaccines is a good idea.

[SheffieldJane]

I know the feeling. There does seem to be a propensity for Shingles with us though.

[Grammy80]

Just saw this, Jane. When I approached my GP and specialists here in the States.....the overall response was live, or dead, " Why throw another monkey wrench into the works." I tend to agree especially not that I am back on Actemra. I did get a call from GP to make sure I came in and got the flu (done) and pneumonia, Pneumovax, vaccinations and will do.

For sure a personal decision but I've decided to forgo the shingles vac even though I had a good case if shingles last year. They were all over my face, inside my nose and mouth. YUK. We don't get a lot of guaranteed in life, do we...we plod along and do the best we can. For sure the forum gives us plenty of information.

Take good care.💖