I’m 59 with Sjögrens and a number of chronic conditions. I’m going through a bout of shingles after a bad ear infection (5 sets of antibiotics later). Ended up with shingles in the trigeminal nerve area, which was not picked up in time for antivirals., in spite of me flagging it with gp and then when in acute pain in a and E. Got treated like the worried well.
This time is actually milder, but the neurological pain, tinnitus, swollen glands are not easy to handle. The first time I got shingles, it was on the left side of my face , 4 days after onset , I developed severe facial palsy, with concerns re my eye due to shingles . This was 5 years ago. I never fully recovered, I still wear an eye weight to keep my eyelid closed at night, and have regular physio/ Botox treatment to help with pain.
I saw my gp last week and discussed if I could get the vaccine even though I don’t fall in the correct age bracket. He agreed that due to my 2nd shingles round , an exception should be made and he would follow up. He then got back to me and told me that I cannot have it , as it is not proven to be effective for my age.
What are your thoughts re the vaccine?
Have any of you had the vaccine around my age?
Will it work?
I think there may be different ideas in the USA/ Canada, so if you live over there, would be great to hear back from you.
Thanks
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25clai
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Im sorry. It sounds so painful. I’m 59 years old and had my first shot 45 days ago and will get my second one next month so I don’t think she is an issue.
I also recommend acupuncture for your facial paralysis. I had a acoustic neuroma removed and damaged my facial nerve so my eye had a long time to go close to a normal look and acupuncture help me a lot.
I just looked and see you’re American - where the FDA have approved Shingrex for under 70s and view it as more effective, not less, in our age group. Who is right about this I have no idea but in U.K the opposite seems to apply. I know this having read a post on Smart patients Sjogrens forum recently.
I feel your pain horrid horrid shingles and the accompanying problems . Had 3 bouts in one year and nerve damage .
I’m not the right age for the vaccine and was told it’s not suitable or effective .(I’m in UK) . Really hope you feel better soon and sorry I can’t offer any other help xx
Hi, I also suffer from recurrent shingles. Both my rheumatologist and Gp agreed a couple of years ago that the best option would be to have the vaccine but unfortunately it was denied. The fact that ive had recurring shingles didn't matter, it came down to my age
I also have reoccurring shingles. My Lupus consultant said he could put me on a dose of acyclovir to be taken every day.. but I decided I am on too many tablets already.. one type of vaccine is live so I am unable to have that due to being immunosuppressed. Take care and hope feeling better soon
my rheumatologist told me to only have the inactivated vaccine, but it’s academic if nhs won’t do it. I suppose I could pay, but it may be a waste of cash etc
you can get the Shingrix inactivated privately at some pharmacist places. It’s £220 per dose and 2 are needed. I would need to win the lottery I think!
hugs to you too. Feel a bit of a wuss, compared to your experiences. I’ve just seen my therapist for facial palsy who treated my other side.she has told me in right in the middle of it and it will be a while before rash subsides and I go through the third phase. Could be another 2 months apparently of going through the infection clear up etc. and even then nerve pain I know could continue for a long long time. Feel like screaming. She couldn’t understand why no one diagnosed it and gave me antivirals given my history. 🥴
I take a multivitamin which is heavy on b complex. I have regular blood tests which indicate normal levels of B 12, however, both my Mother and grandmother have pernicious anemia, so I am mindful of symptoms etc.
If you haven't been checked further than just serum B12, you may well have an issue that is being missed I'm afraid. B12 deficiency is quite hard to get diagnosed and you can have a cellular deficiency at any level of serum. As you take a B complex, your serum will be most likely to look ok, but symptoms are the only real guide as well as the blood indices and things like homocysteine, MMA (methylmalonic acid), intrinsic factor antibodies, parietal cell antibodies, serum gastrin, active (holo tc) B12. There is no 'gold standard' test and all of them can be normal and you still have a problem. At least one doctor is of the opinion that some of us are prone (likely genetically, as B12 metabolism is strongly genetic) to a B12/folate deficiency - and that if that is identified soon enough and treated we will never go on to develop the late stage PA. (I have an appointment in a couple of weeks' to investigate that, as I have a B12 issue, as does Dad, and three previous generations had PA. He and I have supplemented for many years.) Your symptoms may well not be the same as those of your mother and grandmother - we all have/had B12 D symptoms, but it is not manifesting in all in the same ways. There will be enough B12/folate in your multi to skew the results and make diagnosis really difficult but not enough to fix a problem. Best wishes
thanks for all the details you have passed onto me. You have definitely got me thinking re some of my nerve issues I am experiencing. It seems you have a similar family history with PA. Another irony is my 19 yr old son has a folate deficiency, is very tired and has pins and needles. He is going through tests and follow up with the gp. 🤔🤔🤔
Please, please do not let them give him folic or folate supplementation until they have really (all those tests I mentioned) checked his B12. Could precipitate a bigger problem (like SACD). Unlikely to be only folate, the two are so interlinked, so you have to do the B12 first. (Adding a little methylfolate to my B12 did make a noticeable improvement for me, but I'd already been taking plenty of oral B12 - and I'm still concerned that I'm not getting enough B12, hence neuro has referred me on as he doesn't know enough (his words)). Best wishes to you both.
thanks, I think he was given folate supplements, but b12 test was done within a few days, so hopefully the folate levels won’t have increased or masked something else.
Hopefully! But if it was only serum B12, it is not enough to identify a B12 deficiency. Some now say that the folate/folic won't precipitate a crisis, but they aren't risking putting it to the test, as it can do and can be serious/irreversible. The patient info leaflet in the (probably) folic will say not to take it if there is any undiagnosed B12 deficiency or PA, so I would wait and check with someone more knowledgable - unless your GP is very unusual, they will not know. Cheers.
I’m 59 diagnosed with SLE, Sjogren’s, and Raynaud’s. I live l in the USA. I’ve had shingles 3 times. When my rheumatologist suggested taking Shingrix, I took it. It’s expensive, but fortunately my insurance paid for it. It’s been a year and a half, and so far no shingles
interesting reply, I think for me it will be money well spent if I have to pay for the vaccine, if it works. Sounds like your feedback is encouraging. Cheers!
I have recently just had my second Shingrix jab. I am not allowed to have live vaccines due to me having a very comprised immune system and I also am under the age of 70 so therefore after thinking long and hard I decided to have the jabs. I have had to pay for both my jabs not available on the NHS for my age. My rheumatologist recommended that I have them after having my second bout of shingles in two years in February which like you I found very debilitating.
My local GP agreed with my rheumatologist and arranged both actual jabs at a cost of £160 each and my local chemist also charged me £27 extra for each of them to order them in. I did feel very washed out, tired and a very sore arm for a few days after each one but I took the decision to have them as the thought of possibly having shingles every year was a far more daunting thought for myself. Time will tell if I’ve made the right decision hopefully I have. Good luck .
thank you for sharing your experience with me. It sounds like you have a very similar experience with shingles. I tend to get a lot of side effects to drugs, sometimes the more rare ones, but I think it will be worth having the vaccine. Although I have a lot of pain etc, I feel I have got away lightly compared with the last time, but every time I had a Covid jab , I had skin rashes, which was concernIng and it always feels like shingles is never far away.
I really don’t want to live the next 10 years like this before I am eligible for a vaccine , which could help. You’ve really made me think too.
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