I said I would let you know how I went on with the shingles vaccine. I had the vaccine two weeks ago tomorrow. I had a lovely nurse who was very friendly so I felt I could chat to her. I wanted to confirm that I was having the non live vaccine and she said yes, I'll go and get it out of the fridge. When she came back and was preparing the injection I said, more for conversation than anything, "I believe I will have to have another in August." She said "No, it's a one off." I went on to explain that lots of people on the nras blog are saying you need to have two, 2 months apart. She said she had given lots of them but only one. I said that was strange and asked was it Shingrix etc. which it was. She gave me the jab and said I'll just go on the web and double check, then she apologised and said yes, you are right and ordered some more at £160 a shot. The jab hurts because they have to go in deeper than normal jabs, which was fine but within 12 hours my arm had swolken a lot, was very red on the inj site and by 24 hours the redness and raging heat was travelling down to my elbow. I also felt quite shaky and unwell. It had caused a bad reaction. My arm problem lasted 5 days but 2 weeks on I still don't feel great. I know I have to ring and let them know but haven't done yet as still deciding whether or not to have the 2nd one. At this moment in time I am not going to have it but my appointment is 21st August so time to change my mind. The problem is I don't know if it is the jab or that it has caused a rheumatoid flare. Any advice would be welcome. Sorry for the long post.
Update on shingles vaccine: I said I would let you know... - NRAS
Update on shingles vaccine
You must report it on the Gov web site, that is a severe reaction Sheila, really not right at all , they need to know these things - please take some advice, before you have another, you are probably pretty scared right now. A lot of vaccines cause rheumatoid flares, Covb certainly did, please take care of yourself, do you need to have the second, have you had shingles, you have made me really think as this is one vaccine I would have as I dont want shingles again, hugs G x
Did you actually see the name of the injection you had? Can you access your NHS Health record & see what it says?
It seems these days, Practice Nurses are very Gung-Ho about Compromised immune systems & about which vaccines should be avoided if you are on certain Biologics.
I had a running “discussion” with a practice nurse pre Shingrix availability on the NHS & despite actually printing off the NHS Advice & giving it to her she STILL wrote to me trying to scare me in to having it…but I wouldn’t give in …& now on my NHS Record it states “Refused Shingles vaccination” about three years running. ..but gives no reason.
That was at a previous practice…but lo & behold at my present practice…..the record for my Flu jab states “refused Infuenza vaccination”then in the next section down, covering the same date”Patient received Infuenza vaccination at pharmacy” . At least it was corrected..but it was duplicated the next year. It appears they don’t check the previous years.
Maybe entries can’t be deleted, but you’d think they could just state “correction”…so patients don’t appear to be Resfuseniks
Did you fill in a Yellow Card noting your reaction? You can find the form on line.
I’m quite happy to be labelled a refusenik 😂
You missed my point LM. I was not a refusenik. I was saying I could not have the vaccination for safety reasons…not because I just didn’t fancy it!
When you move practices….if for any reason the new GP looks at your clinical history….& it’s peppered with “Patient refused xxx.” Over & over with no reasons why…..it does not bode well.
Covid brought about an increased awareness of vaccinations because there was so much publicity about how quickly the vaccine was developed. Prior to that the MMR Vaccination had people refusing it for their children because a scientist published incorrect research saying it caused harm …I think I remember he said it caused autism (?) …..but even though xxx years later, when that research was publicly proved wrong…. some people will still not have their children vaccinated against MMR….….hence many more kids than necessary catch measles, mumps & rubella.
oh don’t get me wrong AC …I’ve had the shingles vaccination… I just don’t have ones I don’t want regardless of what it says on my medical records … it’s no one’s right ( esp NHS ) to judge anyone as we are all individuals ( just look at the various regimes we’re all on here it’s not one size fits all) Ps my daughter was vaccine damaged many years ago and I don’t believe in blindly” following the science” against my own informed judgement.
oh …. And also… I don’t know a GP ( a few of my relatives areGPs) who have time to read through patients medical records or to care why they didn’t have a vaccine. I just mean to say it’s really not worthy of time or worry to care what’s written on your notes .
Perhaps it would be a good idea for her to double check anything she’s not sure about before rather than after she gives her patients a jab.
Hope your arm feels better soon. It sounds very painful.
Thank you. Good point. My arm is fine now but I still feel off.
HUGS xxx
Yes…..definitely check before she actually gives the injection!
I had same with Shingrex but Shingles was much worse so did get the 2nd one and no problems at all. My arm did hurt like hell too but Shingles was so bad I got taken into hospital for pain relief. And there is no guarantee that the vaccine is 100% it’s something like between 40 to 75% effective but even so I was glad to get it. Please if you’ve not had Shingles do get the next one as any sort of protection is better than none and I still have an area of nerve damage on my left leg some years after getting it. That does still give me some pain at times.
Ooh. Thank you. That scares me now. I believe the non live Shingrix is 75% effective and the live one is 90+ effective but they only cover you for 4 years minimum and possibly 8 years.
Interesting. My rheumy said the live one wasn't very effective and their assoc is trying to get Shingrix on the free list (in Oz) so I'm waiting a couple of years. I've had PMR for six years and just when I thought I was over it, it morphed into RA . Still got a few years before 80 so I can wait.
Do you know if I at over 80 can pay to get Shingrix? I know they say Zostavax isn’t very effective for the 80+ age group, but I wonder is either vaccine actually contra indicated.
I know I can’t catch it from anyone…but recently a few people locally have had it..
Pointless asking at GP surgery…….don’t think the receptionist has-reached either S for Shingles or V for viral infections yet in her learning curve
I thought it was between an age band as I was under 70 so consultant had to write to GP for me to get it even though I had Shingles so badly. It’s Green Book regulations. I’d say it’s worth paying for if you’re at risk as Shingles is awful. But we are all different and some seem to get it so mildly. I know some get it mildly but everyone I know whose had it says the same, it’s dreadful.
I did have shingles in my head/face a few years back …it was bearable, but I wouldn’t want it again- so I would be willing to pay for a vaccination, even though it might not be as effective ….it could have some effect.
But….we are now in July …so even if I got it next week the second jab would be September ….when I usually have my Flu jab…then I have to fit in a Rtx infusion.Maybe I will investigate & wait until after Christmas!
h
Hi Me too. My last bought of shingles was so bad that I had several hospital visits. They wanted to keep me in. I also nearly lost my sight in my right eye because of it. I'm OK now and had the shingled jab and would recommend everyone to have it. Shingles in no joke
The nurse needs to be updated and quickly so I’d have a quiet word with the practice manager and let them know what’s happened with your vaccination so it doesn’t happen to someone else. Sorry to hear you’ve had a bad reaction. I was lucky with both of the jabs eight weeks apart as, apart from a sore arm for a few days, I had no reaction at all. I hope you will feel able to have the second half of the vaccine as it’s a hell of a lot better than having shingles whatever reaction you have! Best of luck, feel better soon.
Thank you. After last two replies I am thinking I had better have it. I do get flares after covid vaccines so maybe that's what this is. I am mainly wiped out and a bit shaky. I will notify my GP.
Hope it works out but obviously it’s up to you - and if you think you’ve had a severe reaction to substances in the vaccine it would definitely be worth talking to your GP before you have the second jab.
Thank you. I have a telephone appointment with the senior nurse on tuesday.
Yes I agree. The more I hear from people who have had shingles the more I feel inclined to have the 2nd.
I was warned about the reaction you had, but I didn't even get a sore arm from Shinglrex.
I have had the first dose of Shingrix and will get the second in early August. I had very little reaction, just a slightly sore arm for 24 hours at the injection point.
I’m sorry you have had a bad reaction so do let your GP know and report it if you’ve not done that already. Also tell your practice manager about the initial mix up. It’s worrying that there are previous patients who may not have received full protection.
Yes it is. I have a telephone appointment on tuesday morning. I will certainly discuss all points
Do you have to pay for the vaccine or is it offered under the NHS?
My (NHS) surgery have just offered me a Shingles and a pneumococcus vaccine -because of my advancing years I suspect. Should be free for me I believe.
From age 70 - 79 the Shingrix vaccine is free as it gives quite good protection against shingles, though not 100 percent. After 80 it’s been shown to have a very much lower incidence of protection so the NHS doesn’t offer it free as it costs too much and for very little return in terms of health benefits.
Presumably if you arrived at 80 and wanted to have the vaccine you would have to pay a private provider. It does seem something of an anomaly given that shingles mainly affects the much older population but who are we to question science but mainly the bean counters?!
I was just curious because I live in South Africa and we have to pay for it and it is very expensive here - I was thinking as a British citizen before marrying a South African resident and paying all my taxes etc. I would pop over and visit my family and maybe get a Shingles vaccination! However, I don't think my sisters could put up with me for several months between doses, and besides that, I've just had my 80th birthday !!!!!! So if I want it, I guess I'll have to shell out what is, with our terrible exchange rate, several thousand Rands !
😄 Let’s hope a case of shingles never crosses your path now!
Hi,
I’ve been following this discussion as I turned 70 this year and am now eligible for the shingles vaccine. I had a long discussion with our outstanding practice nurse about it and she gave me the Shingrix leaflet to take home and think about before booking.
Since I was undergoing dental surgery for wisdom tooth extraction I wanted to make sure my body had recovered from that before stressing it out again! It was very slow to heal!
Earlier this year I had a bcc removed from my nose and that wound took about 6 weeks to heal with frequent dressing changes from the practice nurse so I am learning how my body behaves now!
So I had the Shingrix vaccine a week ago. I saw a new nurse and she was very friendly. I explained that the covid vaccine had been the trigger for my RA. She confirmed with me that I still wanted to go ahead and assured me this was non-live. The jab in my arm was more painful than any other vaccine I’ve experienced and I felt an immediate sensation all the way down to my fingers. I took paracetamol immediately on the nurses recommendation. For the rest of the day I felt ok. Took more paracetamol at bedtime.
The next day, Saturday, I had a very painful arm with redness and bruising and felt quite ‘off’ resulting in having to rest for most of that day and the next. RA flare and IBS flare. By Monday I was well enough to go out but still not back to my ‘normal’.
Today is day 8 and I’m almost over the reaction but gut still in recovery. I find it interesting now how vaccines impact my gut and that radiates out to other body systems.
I’m tentative about the second dose booked for end of August as apparently the reaction can be worse. But I will make sure I am prepared for it and ride it out, I guess.
I have reported all my symptoms on the Yellow Card system as the govt need to be aware of the impact of medicines on us, the autoimmune disease community, and initial trials of Shingrix apparently did not include us.
Take care everyone x
I had shingles around my right eye after having covid last December, I am 73 but because of restrictions didn't get the shingles vaccine. My GP quickly gave me antivirals and they stopped the shingles from getting any worse.
Unfortunately practice nurses know very little about any vaccines of any kind. I'd always go to a specialist clinic such as a travel health clinic, as they do have specialist knowledge.
We just cannot win! I had shingles plus complications three years ago and had to give up work worried about getting it again but worried about jab too💐
I just had my second one and was told 6 months apart which it was. I felt lousy for 5 days and my arm was sore but now I am fine. My doc said 2 shots 6 months apart are what works.
Hope you feel better..
I find it very frustrating that some medics say one thing and some another. Surely they should all be singing from the same hymn sheet. It would make life much easier. There is a big difference between 2 and 6 months. Thanks for your reply.
I've just read up about it and it can be anything between 2 or 6 months between doses depending on the individual patient.
Thank you
That's exactly what happened to me and I'm struggling to get back on my feet so very dubious about having a second one
Sorry to hear this but I know exactly how you must feel. I had the Shingrix vaccine and within a day I had similar symptoms. I phoned my doctor after 3 days who said she would like to see me. I took photos of my arm with me as the redness was beginning to subside. I couldn’t fault my GP - she prescribed antibiotics and a cream and said I mustn’t have the 2nd vaccination. My records state that I had cellulitis.
Really? That is interesting. Thank you.
hi Sheila I had one couple years ago and told it would two jabs in two months but I had just a bit of itching after I asked Rheumy nurse and said I shouldn’t have another !
hello 😁
I had the shingrix vaccine 4 days ago, I purposely didn’t look up anything about it because personally I’m not a great believer in pharmaceuticals and knew it would freak me out. I prefer to take a natural path wherever possible but that’s just me, I’m not saying they don’t have a place.
However, with CLL and ME/CFS I’m between a rock and a hard place and took the plunge, it is a painful injection. Arm became sore and swollen within a few hours and the next morning I had a headache and low grade fever, heart rate elevated by around 30 bpm even though I was in bed completely resting. I felt really awful, my lymph nodes in my armpit have swollen and so sore (same side as injection) I am aggressively pacing but my body is still fighting hard, it has caused a big relapse in my CFS and I feel weak, I can just about make it to the bathroom 🙄
I wear a garmin tracker watch which tells you how stressed your body is (I use it for pacing) my stress levels are very high even though I have been in bed since the injection with very little stimulation, eaten little as digestion puts stress on my body too. I am pretty much bed bound anyway but felt like I was making some progress, this has knocked me right back. 4 days later, heart rate still high and symptoms not improving. Praying I get back to where I was soon 🙏 Don’t think I’ll get the second one.
I too was quite ill after the first one, although not quite as bad as you. It triggered my atrial fibrillation ,which had been settled for ages. It really hit my digestive system, and I couldn't leave the house for a few days.I also started getting pins and needles in my leg. I'm not sure about getting the second one either. Hope you recover soon. Look after yourself x
Thank you for your reply and for the good wishes.
How long did your reactions last and have you made a full recovery back to your base line?
I hope you have no lasting effects and doing well now xx
I was really bad for about a week then gradually started to feel better. I had the jab on the 11th. September. GI system is back to normal, but I still don't feel 100% and still getting the pins and needles, which I never had before the jab. I'm ok for a day or so then have to rest again.....however.......
I should add that I'm waiting for a referral to cardiology ( suspected heart failure) so some of the fatigue could be due to that.
Sorry to hear you are still not 100% and going through the worry of possible heart failure.
I hope you get a resolution soon and it’s a simple solution 🙏
Take care x
Thank you for your kind wishes. I hope you start to feel better soon x🐰
That sounds awful. I don't blame you for not having the 2nd one. I ummed and aahed but decided to have the 2nd. I was exactly the same as after the first but glad I had it. I hope you feel better soon,
Thank you, hope you have recovered from the second dose now.
Yes I have thank you.
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