Your thoughts, advice and perhaps your sympathy, would be greatly appreciated please. I'm sure my invitation to have the vaccine is imminent and I'm worried. I've debated with myself for weeks about the best course of action and I'm going round in circles. The last time I was vaccinated was in 1991, just before going on holiday to Tunisia. I was given typhoid, cholera, tetanus and hepatitis B all at the same time and the reaction over the next few days was quite severe - high temperature, aches and pains, stiffness etc which lasted a few days. The long term effects were even more severe, I was 'plunged' into an immediate menopause aged 43 that took many months to diagnose and the HRT that was subsequently prescribed caused more problems than it helped. On one occasion I collapsed outside the hospital I'd just left after an appointment in the Menopause Clinic because of heavy bleeding, picked up by the Police (who originally thought I'd been taking drugs) and taken by ambulance to a different A&E etc. It was at this point I decided it was time to learn more about alternative therapies, treatments and more natural ways of looking after myself, in particular my diet. I haven't had any vaccinations since. It wasn't easy but I persevered and managed reasonably successfully until GCA hit me just over 8 years ago. As we all know, there is no alternative to taking the strong drugs which I felt hit me very hard. I was in a blur and even though the headache was controlled, I felt ill and couldn't think clearly. Several more drugs were added in an attempt to help me reduce the prednisolone, methotrexate, aizathioprine and mycophenolate as well as BP meds, alendronic acid then zolendronic infusions. I was a mess. I managed to stop Pred after about 5 years while I was still on mycophenolate but PMR struck with a vengeance soon afterwards and the journey started all over again. The big 'but' this time was that I found this website and the most knowledgeable, common sense people I've ever come across, so the journey has been different. Armed with what I've learned here, I've had much more input into my treatment, drugs and pred reduction schedule and so far I'm coping better than last time. And then Covid 19 arrived. In my heart, I know having the vaccine is the only way my life will ever get anywhere near back to normal. But I'm scared of the side effects. My understanding is that they trigger some sort of reaction from the immune system which seems to be at the heart of my health problems. Apologies for such a long post, I have tried hard not to go into too much detail but on re-reading I've failed. I thought about trying to talk to GP or my Rheumatologist but I'm not convinced they'd be particularly sympathetic or should that be empathetic. Help please
My Vaccine Worries: Your thoughts, advice and... - PMRGCAuk
My Vaccine Worries
"My understanding is that they trigger some sort of reaction from the immune system .."
That is how vaccines work: they introduce the immune system to something safe that looks a bit like the dangerous virus so that the immune system learns to recognise it for the next time it turns up. A bit like seeing the buttons on a uniform tells you which club someone belongs to, The jacket might be red or brown or blue or green but the buttons are all the same so the members are identified from them.
I can't give you any guarantees - but the chances are that if you were to catch the virus, the effects on your immune system would be far more severe than in response to the little bit that represents the buttons.
But it is your choice - no-one can force you.
Hello Joyce 69 you’ve been through the mill these last few years I can quite understand your reluctance to risk an upset. Your vaccine reaction 20 years ago would likely be to the typhoid and cholera, which are only given these days in very specific circumstances. So don’t let that worry you now, go & get your jab, best thing you could do to protect your health at the moment.
Thanks 123Mossie, that's very interesting. In the intervening years there has been very little comment from the medical profession, a few hmmms, and really's. With the exception of one doctor who called it an immediate menopause brought on by the Hepatitus B. I completely understand about it being the best thing to protect my health in the cold light of day and I'll probably do it, but I worry I'm afraid. I think I've become a bit of a wimp.
I’m in the same thought whirlpool. I’ve always had intense reactions with fever and bone pain that lasted much longer than normal. My last ever two vaccines (Hep B) were that plus six months of chronic fatigue each. I also have another condition where my bone marrow goes bananas every three weeks and any sort of stimulant of the immune system makes that go batty. I probably had Covid in March last year and long Covid followed. I don’t want it again but am very concerned about the vaccine. Had I not had previous form with vaccines I’d not be so worried. No doctor wants to be seen to say don’t have it unless it comes under obvious contradiction tick boxes, so I am not holding out for any sensible conversation even if I could find a doctor who understands all these odd things I’ve got. No idea what I’m going to do.
Hello Snazzy, what an apt expression - thought whirlpool. You certainly have been through the mill and my heart goes out to you. However, not a lot of good that will do you at the moment. Over the years only one doctor has spoken directly to me about the link between the vaccine and the avalanche of unexplained ill health that followed, saying he thought it was an immediate menopause brought on by Hepatitis B. We may have something in common here. Good luck with whatever you decide to do, I'll be thinking of you.
Aren't previous adverse reactions to vaccination a contraindication? This is why all of us who can get vaccinated should, so the people who aren't vaccinated are also protected by the "herd". I don't want to be protecting anti-vaxxers, I want to be protecting people like you and joyce69 and children who aren't yet cleared to receive covid vaccine.
Ah well, it seems that the only recognised bad reaction is anaphylaxis soon after, though I have seen two people with documented neurological system damage from the flu vaccine. Anything else is usually waved away as pure coincidence. Actually an NHS occupational health consultant, back in the day when they actually looked after staff, told me not to touch vaccines ever again. As they were giving the Hep B and I was seeing them throughout, they had it on record. Of course those records have gone and now docs’ attitude is that I’m trying be special or fussing as it isn’t documented. Actually the usual one is they think I think I caught the disease from the vaccine, so go down that route of reassurance 🙄. So far, I’ve avoided them and not travelled extensively. This is a whole different ball game. Not having it means I may become a ‘second class citizen’ by not being allowed places without it or worse, I become more at risk if it turns out vaccinated people are more likely to carry it asymptomatically.
I know they are also saying people with allergies to any ingredient in the vaccine, at least here (Canada). There is so much which isn't known so far, and, face it, every one of us is now in a gigantic fourth stage vaccine trial. There is no getting around that unless we want to wait two, three, four years for long term issues to be revealed. I believe the whole notion of requiring people to produce proof of vaccination before being allowed certain places is flawed, especially as we have no idea whether or not the vaccines are going to protect us adequately when we drop the other ways of limiting covid transmission. We all have to keep on behaving as though we are at risk, or possibly putting others at risk, for at least another year.
Surely if you've had Covid your immune system will remember it even if antibodies don't show up now. Sounds like you have had a really bad time with vaccines and you have the medical knowledge too to help you decide. Please don't get swept along. This is all so new. The scientists and vaccine makers are still learning. Covid is still mutating, decisions are still being made, good ones and bad ones!
Snazzy, can you get an antibody test that will show whether that was actually COVID?
I did 7 months later, but it was negative. I was told I would have probably lost my antibodies by then even though some don’t. However, I have no idea what antibody type they were testing as in acute or longer term. I have today as it happens, just done the finger prick research anti body test.
Not sure if this is relevant but this vaccine (I just had it) is not a live vaccine. The ones you had before might have been? Big difference in side effects apparently. I had no side effects, luckily.
I’ve never had a live vaccine. I think I have trouble with the adjuvants and stuff that kicks the immune system into hyperdrive to make seroconversion more likely.
I think it's the adjuvant in Shingrix (new version shingles vaccine) which makes people feel rotten especially after second dose. However what it is showing in that case is a strong immune response. There was something on our news yesterday about people now getting their second doses of Pfizer vaccine, and feeling sick enough to not go to work for a day. This response was much stronger in people under 50 than in older individuals, which makes sense as the younger person will have a stronger immune response.
I remember when the swine flu vaccine came along when I was working in a surgery, five docs were off for a week each after the vaccine. I later happened to have a patient involved in its development and he said there was a lot of pressure to make it work and this was the first epidemic-like outbreak that they had to practise on and get right. He called it a “dirty vaccine”, though not in the literal sense, in order to force a robust immune response. He didn’t have it himself. I’m hoping, and it seems so, that they have learned some lessons since then, but I expect they really want a good response this time too.
Joyce, I am so sorry you went through all that - how absolutely awful for you. I was a bit worried about having the vaccine, particularly as I get anaphylactic reactions to certain foods and have other allergies and asthma. But following the advice of my doctor and rheumatologist I had the Pfizer vaccine yesterday and so far the only effect is a sore arm - although obviously it is early days and I can’t see what is going on inside with my immune system. The doctors present in the clinic yesterday questioned me closely about allergies, particularly to previous vaccinations, before allowing me to go ahead and have it. If you do decide to have it then I am sure you will be asked those questions too and they will advise you. ❤️ xx
Thanks Susy, you're very kind. Good to hear that you're ok after the vaccine too. I have numerous food intolerances too rather than actual allergies, the most specific being sensitivity to cinnamon and benzoates. So whilst they are not life threatening they are life limiting as the natural preservatives in food cause as many problems as the artificial ones. I ought to be a sylph-like given the restricted diet, but hey ho that's life isnt' it?
Hello Joyce. Yes, a difficult decision. I had my jab y'day and, apart from a sore arm last night, I am now fine. To me, having the jab represented the only way of getting back to any sort of normality and also helping to reduce the high numbers of cases we have seen since Christmas. Sending very best wishes for a much better year for you. Keep us posted! x
Hello and thank you. I fully agree that the jab is the only way of getting back to normal too. I suppose my biggest worry is the unknown and nobody can really help with that one. Chatting about it and listening to everyone's experience and view point here is helping.
A dilemma for sure Joyce69 and I will throw my three penniesworth without having the valuable medical expertise of the wonderful and experienced previous contributors. I have definitely read on an official website that if you do have reactions then it is best not to have the jab. The trouble is we all are different and our reactions are different and as has been said none of us can advise on anyone's specific condition - we can only make suggestions, many of which resonate and are enormously helpful. For me the answer as always is go with your gut knowing - which is how we are dealing with our own versions of PMR - along with the experience of others as a kind of container of possibility.
My choice might be go for the jab as Susie Te did and talk to the doctors there. If you decide against it there (and they may well also agree with you) then they will of course not force you to have it. And anyway how much of a panacea are they? It is going to take years to fine tune them if ever. Our bodies are not a battleground but a garden and health comes through tending the garden at every level (le milieu), emotional, physical and mental. It is interesting that the microbiome (our bacterial garden) is cropping up so frequently as a source of all kinds of classic medical conditions, including auto-immune disease.
Thanks Alchemy8, how I empathise with all you've said. I've been nurturing my bacterial garden for years and I'm convinced it was a huge contributor to staying on my feet and working in a toxic institution after the 1991 vaccines until 2012 when GCA arrived. The body gave up during the first 5 years of treatment but I've been back on track for the past 2 / 3 years. I've felt so much better during the past year which is most likely why I'm very loath to rock the boat with a vaccine.
What an awful catalogue for you. Don't suppose this is any help, but is succinct: my Rheumatologist simply said to me that because of the steroids, "you have to be careful because if you did get Covid, you'd get it quite badly". I'm having my vaccination tomorrow. Good luck with your decision making.
I am so sorry. I also have great fears about covid vaccine and the immune system. Like you, I have a history (and also a family history) of immune problems. I have had 4 autoimmune diseases plus very bad mono at 21.PCOS; celiac, following updating my vaccines; myeloma (cancer of the immune system); and now polymyalgia within 2 weeks of a flu shot.
Now am reading in New York Times that covid can turn our bodies against ourselves. nytimes.com/2021/01/28/heal...
I am extremely wary of doing anything that stimulates my immune system.
Oh poor you, what an awful time you've had. I'm impressed that you found this site so quickly, it took me 5 years! The most knowledgeable and supportive people are here for you whenever you need them. Good luck with your decision.
All I can tell you is that my OH had his first injection on Tuesday and has no reaction at all , other than A restless nights sleep the first night x
Have read all the posts with great interest, I am also conflicted when it comes to the vaccines. Am on 2mg pred and do not cope with stress very easily, perhaps due to my adrenals. To date, this has been our family vaccine history: daughter (42) had Phyzir vaccine yesterday as she is health worker, only reaction a sore arm & tiredness. My husband (80) had Oxford Astrazenica a week ago, all went well until during the night I woke to find him shaking uncontrollably, his whole body was shaking. I thought he was having a fit, but he said he was so cold, I had to put a car rug over our winter duvet. Then he felt terribly hot and nauseous. He tried to stand up from the side of the bed but couldn’t, he was so dizzy, he couldn’t walk unaided. He stayed in bed until late morning then sat in a chair the rest of the day with headaches & muscle aches. He has been really tired and no appetite for best part of a week, I felt so sorry for him. He is a very active person, can do 10mile walks, always busy in the garden, flu jabs have never bothered him. All these reactions were listed in the paperwork he was given after the jab, but it was a shock nevertheless. When you see people on television having the jab it looks like a walk in the park, but it isn’t always. I feel I would be happier to chance having the Phyzir rather than the Astrazenica, like you, I feel it’s the right thing to do, and I do want to see my daughter and grandson again without worrying. However, I am in Fife and think they will be using Astrazenica at their Hubs, other daughter got her Phyzir at the hospital. So also ‘going round in circles’ .
Hallo Joyce, you're not the only one to be worrying about whether to have the vaccine. I think it's difficult to be level headed when all the media and all the doctors are talking about how everyone should get their jab asap. You are made to feel you are stupid if you don't have it. I think most people just have it without looking into it. But remember - the vaccine doesn't stop you getting Covid or passing it on, it just prevents severe symtoms. And it's still early days. More variants are coming, more decisions about how long between doses. More new vaccines. Covid may mutate into a harmless virus, or disappear like the last Sars did. As you have seen in some posts here and also in the press some people react quite badly. My fear is that I will get a worse auto immune disease than I've already got if my immune system goes into shock.
I think that as you have had such a bad time with vaccines in the past you should think very carefully. Yes, catching Covid is a risk. But so is having the vaccine if you react badly. As you said' ' I've felt much better....I'm loathe to rock the boat with a vaccine' I think you know what is best for you.You don't have to rush into it. Take your time, keep safe and decide when you are ready.
"the vaccine doesn't stop you getting Covid or passing it on"
It reduces the chances of you catching it - there is a 1 in 10 chance instead of a much higher chance. And they don't KNOW whether it can stop transmission - that is still an unknown. Passing it on does depend on the what is called the viral load - if you have a lot less of the virus in your body, which is likely if it stops you becoming severely ill, then the likelihood of passing it on is also reduced.
I came across this article a few weeks ago regarding the opinion of experts on whether people with ME/CFS (and many other AA illnesses) should have the COVID vaccine.
The article is lengthy but the information interesting. If you want to bypass the sections about the different vaccine types/side effects etc then scroll down to " ME/CFS Expert's Recommendations" which was what I was partcularly keen to read.
I think the concensus of opinion is that contracting COVID19 would be much worse than most of the side effects that might be experienced. Still, it's a difficult choice!
healthrising.org/blog/2021/...
Useful source Pipalina. And as you scroll down even further you hear of various individual auto-immune sufferers' responses to vaccines. I am so glad this whole discussion has been opened out. For all the gung ho approach that we are being presented with and pressganged into in the media (of course there is no denial that we all want an end to the pandemic and the fear and panic that it has engendered globally), there are members of this group and no doubt thousands of others who do have a sensitivity to vaccines and that should be honoured, respected and held with compassion as in this forum. It should not be potentially tarred with the brush of being "anti-vaxxer" (a very polarising topic). So thank you Joyce69 for opening up a really important discussion.
Going back to the article I quote: The fact that The Pfizer vaccine was not tested on people diagnosed with “an immunocompromising condition” or “unstable chronic medical conditions’.
Immunocompromising conditions included diseases like lupus, multiple sclerosis, Sjogren’s Syndrome, rheumatoid arthritis, etc. The AstraZeneca vaccine excluded people with “severe or uncontrolled medical comorbidities” or “high frailty scores” (if they were older than 65). It too excluded people with systemic autoimmune diseases such as lupus and rheumatoid arthritis.
Another aspect that concerns me is when one takes the long view and what looks very likely to become an ongoing vaccination programme because of new variants just like the flu jab. In other words the pharma companies will be bringing out more tweaks and additions till we are dependent on taking the vaccines on a regular basis. That is also worrying.
Some updates. I note that The Times reports that:
"Vaccination is already easing Britain’s Covid epidemic with early data showing it is definitely reducing cases.Research due to be published within days will provide real-world evidence that Britons are being protected, including suggestions that the effect is still building a month after one dose, said Anthony Harnden, deputy chairman of the Joint Committee on Vaccination and Immunisation (JCVI)."
Also (from another source) if you decide not to have the vaccine the following holds true:
The Council of Europe, the world's leading human right organisation, to which UK is a contracting member, has just announced a binding resolution that governments are not allowed to force or coerce people to have a vaccine.
Neither are they allowed to remove access to services or to use political or social pressure on someone to have a vaccine.
Also stated that contracts with vaccine 'manufacturers need to be published for public scrutiny.
And the so-called 'vaccine/health passports cannot be implemented either, as vaccine certificates are only to be used for vaccine efficacy and side effects or adverse events monitoring.
pace.coe.int/pdf/2e0ee40b5d...
Thanks to Alchemy, Pipalina and everyone else for the fascinating reading and comments, I'm very grateful. I'm still very concerned about having the vaccine and I think the best course of action for me is not to make a decision immediately. I think I got carried away believing that I would need to decide as soon as the letter arrives but you've all helped me realise that I don't. Sometimes I wonder where this blooming condition put my common sense! I'm going to wait a couple of months and see what the longer term feedback brings out re side effects etc. Also try to have a chat with my Rheumatologist who is usually a very pragmatic woman. I've been shielding for so long now that a few more weeks won't make much difference. Good luck to you all in these trying times and stay safe. Joyce x
So glad you've found ground here joyce69. Being rushed is never good for decision making. It means half of you has been left out of the process!!! It will take as long as it takes. 😃
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