Thankyou to everyone who replied to my previous post . Most people seem to be having the covid booster . It isn’t the initial jab that bothers me but what it’s doing long term . I had my last one in November and since then I’ve developed polymyalgia rheumatica, another auto immune disease .
Who knows if the vaccine had anything to do with this ? 🤷🏽♀️
Hi Juliet, I am a long term fibromyalgia sufferer and I suspect if I got flu it would flare up, and I think that's what happened last time because I had both the Covid and the flu vaccines. I wouldn't expect the Covid vaccine to do that on its own, apart from maybe some pain in the arm. I wouldn't expect the covid vaccine to trigger polymyalgia, but in any case, polymyalgia is treatable. I knew someone else who had it and after a while, she was free of it; whether that means she was "cured" or not, I don't know. But I would talk to your doctor about treatment. The effects of Covid, if you caught it, could be so much worse if you didn't have the vaccine, so I would keep having it. It could be a different brand might be better for you. I've always had Pfizer and no problems - just the aching arm for a day or two afterwards.
Hi Juliet 46 - I am very interested in your post. I had my first covid vaccine (Astra-Zeneca) a couple of months before my ET was diagnosed. I suffered a very severe reaction with the violent headache and was admitted to hospital thought to be having a stroke. The AZ caused the deaths of many younger people due to stroke (I am now 81) and I do believe that if I had not been taking a blood thinning tablet for a previous DVT I might not have survived. I think the blood thinner stopped my blood clotting in my brain. Anyhow at the same time I developed neuropathy in my feet with no obvious explanation. I was advised to take all the boosters which I did but every time the neuropathy got worse. It improved a bit each time but never went back to pre-booster state. I talked earlier this year to my MPN specialist and she thought that I should think carefully about taking any more jabs. She said the decision was up to me obviously. Of course at my age I am not out working and mixing with lots of people so probably my risk of getting covid is less than for some.
Another thing which happened me is that I have developed Sjogren's syndrome (it has not been formally diagnosed as yet because of waiting times at hospital) but all my symptoms are tying in with this auto-immune illness. Therefore I am very sceptical about this and have decided against another booster.
Regarding your polymyalgia rheumatica this is not a condition to be treated lightly as seems to be the suggestion. It can be lifelong and certainly can be treated but with steroids which no-one really wants to have to take. I am so sorry you have developed this. My late husband had it for a long time, got it under control and it seemed to be OK but then it came back again. I worked with a Rheumatologist so I know a fair bit about these auto-immune illnesses.
Wishing you all the best in whatever you decide
We know a lot of people who've been ill after this batch of COVID jabs.
My husband has post PV primary MF he's decided he's not having any more vaccines he's never been right since having the first one .
I agree with you no more vaccines for me too
I agree with you . It’s the unknown . We all follow like sheep . Fear . I’m didn’t have spring one and not having this one . I too had ET thirteen years and now PV . Bad aches and pains in joints that I didn’t have before .
Hi Juliet, me too, I have doubts. I had all vaccinations up until now but I am no sure I will have this autumn booster. I was diagnosed with PV in the beginning of the year. I never linked it to the covid vaccination but now it seems I developed an auto-immune disease (urticaria vasculitis). My body is full of hives that stay for more than 24 hours and anti-histamine is not helping (I take 4/day). So, I wonder if these vaccinations triggered something in my body to get these diseases. I'll probably never know ... Have a very nice day (in Belgium, it is a summerday in autumn!)
A Tale of Two CovidsMy daughter has had all the shots and boosters. I chose to have none of them, as I decided against all vaccines about 40 years ago.
She's 57, hypothyroid and seriously coeliac. I'm 81 and MPN unspecified. Both otherwise healthy.We flew back together from a family trip to Malta 10 days ago. She was ill almost immediately with headache, raging fever, snotty, no appetite, generally miserable and with a really uncharacteristic bad temper. I refused to stop hugging her, because she's my daughter and I rarely see her because she lives half a planet away. As expected, I tested positive on Friday. Irritable weepy, snotty, slight sore throat and loss of voice. But quite good appetite. We continued to hug. Lots. Sue tested clear a couple of days ago and has gone off to finish her grand tour of family visits before flying home Thursday.
I am still coughing up a storm and wouldn't go near anybody else, even if I tested clear. Will only test when I am well and feel ready to go out. Meanwhile, I am cooking and eating well, but still irritable and weepy, and missing the hugs.
Love and Light from Daisy
Hope you are better very soon Daisy and can get some more healing hugs on board xx
Thank youbRaz xdx
No I’m not having this latest booster, I didn’t have the spring one either.
I’ve thought about it long and hard but I’ve too many other aches and pains., suspected P M R ( diagnosed by my haematologist) we’re watching and waiting!
Also A FIb which I didn’t have before the first vaccines. Could be co-incidence of course.
I’d say this is more likely than not, caused by the vaccine. I also experienced this after having three rounds of the vaccine here in the states within the first year it was available. I went to multiple immunologist who basically said it’ll go away or it won’t and to continue antihistamines. Mine finally went away but I was a god awful experience that I don’t wish upon anyone. What worse is initially my specialists took me off Pegasys bc they thought it could’ve been a trigger for me.
Good luck and hope this goes away for you!
Your specialist was wise, this knowledge is sadly lacking in the field. You can read my horrific journey with my permanent autoimmune disease via Vax+ IFN. It's possible Dr saved you from this risk, but of course one can never know for certain.
Hi, my hyves have finally gone thanks to injections of omazilumab. I don't know what will happen the day I have to stop these injections. As you say, hyves are awful, for me not only because of the itch but also because nobody can guarantee you that it will pass or when it will. Glad to hear that you're okay now!
Hi Juliet
I have been advised by my haematologist to have the latest covid booster, but I really don’t want anymore. I’m so undecided what to do. As it stands at the moment I’m not going to have it and hope I have made the right decision.
I have ET and am taking interferon, I feel well have had Covid twice I know each time it’s another variant but I’ve survived.
I don’t want to risk what’s happened to you but then there’s also the risk of not having a booster like you say what do we do for the best 🤷♀️.
I find it interesting and hopeful that so many drs are now advising people to “ think carefully “. That to me means , “ if I were you I wouldn’t take it”. Drs still aren’t allowed to say this openly as it could mean they lose their job, as so many have already. They obviously see a lot of patients ( in addition to their family and colleagues) and there is now a great deal of evidence , much of it given in law courts under oath, that the jabs are causing harm/ death in some people . If you are really worried about the risk of getting covid, I would suggest you get your Vit D checked by your gp first as low levels of this have a strong correlation to getting ill from covid. The lower your vit d, the sicker you get. I would also stock up on vit c , zinc.
Personally I don’t know of anyone who got either really sick or died of covid. My husband however had 7 of his work colleagues die from the jab, most in their 30’s and 40’s. They were all fit ( some military/ marathon runners etc) all get full annual health checks including heart tests, at work and none had any underlying health conditions. The youngest person I know of was a 22 yr old girl ( friend of a friend ). Absolutely tragic.
I personally have not taken any of the jabs. I did get covid once according to the test ( which btw can’t distinguish btw flu and covid) Felt ill for a day and that was it. My medical training naturally made me very suspicious. Everything I had learned about caution was thrown out the window. I prefer to wait for the long term data, ie: 10-20 yrs as a minimum . Bear in mind though that they got rid of the placebo arm after a few months when they first tested these covid products .”Bad “ products are usually around for decades before being pulled off the market. For example: Thalidomide, DES (Diethylstilbestrol).
But is right and ethical when doctors say the choice is yours, as it should be. No one should be coerced into taking any medical treatment for any reason. You make the decision as you have to live with the consequences, whatever they may be.
It would be interesting if the drs actually write in their notes “ advised patient to think carefully “ . I guess this might protect them legally, if things go wrong.
Thank you Amethist for this reply, I have been debating with myself for a while on whether to have the Covid vaccination. Having read all the previous threads I thought it was just me that was so undecided and that everyone else was getting it. I had Covid earlier this year and was poorly for a few days but quickly recovered. I had the booster last Autumn. Would I have recovered without it so quickly, who knows. Interestingly though, my platelet levels that had been well controlled for years became much higher since the booster. Seems to me, we just don't know enough about these vaccines!
That’s interesting. I’ve heard quite the opposite from all the docs and MPN specialists I’ve heard on the subject. They are urging that anyone eligible should get the vaccine.
I get that this is in part to do with ensuring the health service isn’t overwhelmed with people seeking help for Covid (and flu) complications. But I think that’s a reasonable ask of a community.
Living with the consequences of a personal decision is one thing The issue come when the consequences of personal decisions impact on the community at large.
Certainly many doctors have and may still encourage the jab. I guess when your job depends on it, you might well say that it’s still good.
Probably interesting to ask the Dr how many jabs they have themselves taken.
Also don’t forget GP’s received typically between £10-20 pounds for each jab they give. Still do. That’s quite an incentive to some, easy money. MPN experts are not experts on vaccines or virology, so they can be in the dark too. Also this type of jab is totally different to all the other traditional vaccines, so there is no long term data and therefore no one can say how safe they are.
My daughter in law, a medical doctor, told me they only ever learned about the vaccine schedule, never about the diseases themselves or possible alternatives treatments.
Under oath, Pfizer admitted that they never tested the jab to see if it will stop transmission and the evidence is clear that it doesn’t. The government already acknowledge that it won’t stop you getting it and it won’t stop you dying from it. So I’m not sure it’s had any impact on protecting the community at large. What has harmed many though were all the lockdowns and the consequences of that on every age group. Especially school kids who had their education severely impacted. The repercussions of that alone will be huge and long term. My family who work in education are having to deal with the fallout daily and are thorougly depressed by the situation. My family working in health care want to quit. They are seeing conditions they have never had to deal with before. Makes you wonder.
The jab and boosters are known to cause autoimmune issues and other nasty side effects. I myself won't go near any of it and never have. I had covid and it was no big deal. I treated it early with Ivermectin and other things. I never had fever and I never had breathing problems. Most importantly, I'm not having any side effects.
I have had covid twice now, both bearable, et jak2+ 11 years, on both occasions my platelet count went up considerably for a couple of months afterwards before falling again. I have had all the vaccines and will be getting the 8th next week. I know a lot of people who were very poorly with covid. Also several of my friends died with it early on.
What scared me about having any more Covid vaccines was a report about the Pfizer vaccine being given was not the formula that had been approved. As a result the instructions for waiting time had been lengthened after the vaccine had been administered due to the possibility of anaphylactic shock.
The problem is we really don’t know! I have just had my 8th jab. I only developed ET some time after the first one as I know my platelets were normal some months before. But, on the other hand, people developed ET long before Covid jabs existed! I also had follicular lymphoma many years ago so I may be prone to blood cancers. I have always had the Pfizer jab except one Moderna after which I got shingles that has left, it seems, permanent nerve damage to my foot. Again, who knows if there is a connection! I believe we just have to follow our own intuition and hope for the best. All the best to you!
Hi All
Some interesting responses to this one that I have read with interest.
I am due a covid booster but have held off as the last one I had made me feel exceptionally ill (covid symptoms) to the point where I said I’m not having any more.
However, as I write this, my wife is in bed with covid. She’s been so ill she hasn’t been able to get out of bed for over a week. She has had her vaccinations but this doesn’t seem to have impacted on her getting covid & her symptoms are still very bad.
With this in mind I’m now thinking that it is still important to get the latest booster on offer, in spite of the fact I think it will make me ill.
I’d appreciate any guidance on this.
Hi Juliet,
We have same experience related to covid vaccine, which make me easy to fatigue, dizziness and weak.
I choose not to get any covid vaccine anymore.
Cheers
Thanks everyone for replying. I guess it’s down to personal choice now
Hi Juliet46 - what was your diagnosis pre -polymyalgia?
Not sure what you’re asking me . I had severe pains in the tops of my legs and down towards my ankles and milder pain in my shoulders and neck. There were several infection markers in my blood also. My haematologist suspected PMR and wanted me to go on prednisone steroid. I didn’t want to as I think I take enough medication, so I thought I’d try an anti inflammatory diet first. I still have painful legs and problems straightening up and walking, it tends to come in flares but I’m living with it.
I wouldnt touch it with a bargepole , have had none of it and wont , the lack of testing on it was scandelous , ( check out the testing trials data ) and the side effects including blood clots are just not worth the risk , it didnt work anyway , you could still get covid after 3 or 4 jabs , the money making scam of the century so far ,, good luck
I’ve got ET & PV no spleen I’ve had all Covid vaccines a mixture of all on offer I’ve had no problems with any
I did catch Covid last December and was over it within a week probably due to the vaccine
I’ve recently had my flu and booster Covid
Also yesterday my pneumonia vaccine and shingles
I’m on 1500 mg hydroxycarbamide a day plus lots more medication which is keeping my alive
3rd dose COVID vaccination for MPN patients
ET following Covid Vaccination
Childrens Vaccination
Covid-19 vaccination and bone marrow
