When the vaccines for covid first appeared I received the AstraZeneca type. Two or three weeks later I ended up in hospital with unbearable headache and not able to lie down. The pain was excruciating and it was thought I was developing a stroke. I had a brain scan and fortunately it was not a stroke but the same reaction to AstraZeneca which was killing younger people. I feel I would not have survived if I had not been taking Xarelto (blood thinner) for a previous blood clot.
At that time I had not been diagnosed with ET. Some months later I was diagnosed with ET Jak 2 and treated on hydroxy.
After that first vaccine I developed neuropathy in my feet and ankles but did not link it to the vaccine. However, I continued to have all the boosters (most were Pfizer and one Moderna). I then realized that after every injection my neuropathy symptoms flared up and became worse and did not settle back again.
When I discovered this I spoke to my MPN specialist. She said she could not tell me not to get the vaccines but to "think very carefully about what is happening and make up your own mind".
I have not had any more boosters and will not do so in the future and my neuropathy is stable at present - not seemingly progressing.
I do not feel I can mix with others much and I always wear a mask when at doctors surgery, etc. I am 82 and miss all the company I used to enjoy but the risks are too great.
I just posted this in case other people have suffered in this way. It would be interesting to hear.
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Jelbea
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You can read my post "last dose" for a worst case vax outcome. Neuro trouble is quite often the signal of potential danger in the rare adverse vax cases so your Drs advice makes sense
If you do opt for another COVID vax the Pfizer should be safer than the Moderna since it is 30mcg while the Moderna is a larger dose at 50.
Hi EPguy - Thanks for your response. I have followed your posts and hope you are feeling OK at present. It is possible that I have developed mild Sjogrens. I have difficulty swallowing which I am able to cope with at present also dry mouth, dry eyes, etc. However, I decided because there is no easy way to get a diagnosis and not much help even if you are diagnosed that I would not go down that track - maybe I should. However, at age 82 and various ailments as well as ET I already have so many appointments that I keep my daughter very busy shuttling me to and fro. I seem reasonably stable at present so I won't rock the boat😃😃
The "also dry mouth" is actually "because of dry mouth". Your saliva is not enough to lubricate the throat. You're fortunate your Sjo remains mild. Watch also for any neuro troubles, this is part of the endless Sjo spectrum.
You're right about the trouble getting a Sjo Dx. But it's worth having. If you're SS-a antibody + the Dx is easier. You could request the antibody panel. There are treatments that can help the dryness, while you're right there are none to treat the disease. That is about to change fortunately.
From my posts you can figure IFN may be contra indicated for you, but the Hydrea is working ok, is that right?
Thanks on the inquiry. I'm in a fairly stable stage of misery, I am usually able to leave the house.
Hello again EPguy and thank you for the further information. I may go down the track of finding out if I have Sjo. I have other ailments as well as ET. I have severe restless legs syndrome and have to take an opioid - sublingual buprenorphine - for this. Opioids as you probably know cause dry mouth symptoms. I also take the blood thinner rivaroxaban which also can cause dry mouth. I have macular degeneration and get my both eyes injected every three months. This condition can cause dry eyes. I am therefore in a "no win" situation😃😃
I have been lucky in that HU has been working well for me at a fairly low dose although making me extremely fatigued but as I am 82 I do not expect to have too much energy anyhow.
I re-read your long post. It is so good of you to give out all the information in the hope it might help someone else and obviously it took a long time to get all the information set out. I actually posted about the AZ vaccine as I hoped it might also help others who found themselves in similar situation. It took me a long time to tie in the neuropathy with the first vaccine (AZ). I was just starting being investigated for high platelets so I had other things on my mind. I do feel that the vaccine made the ET progress more quickly probably from inflammation.
I do hope you will get some ease from your ongoing nightmare and I will be thinking of you and following any posts. Good Wishes and many thanks. Barbara
I had two AstraZeneca vaccines - the first one without any adverse effects.
Days after the second I developed Oedema in both feet and ankles, neuropathy, and toenail atrophy. I lost four toenails. A sore developed on my right ankle which took 12 weeks to heal. I had multiple tests at the hospital, all came back N.A.D. I asked my GP whether my symptoms could have been caused by the AZ vaccine and she said "I can't say as we don't know" (this was during the early days of the vaccination programme)I filled out a Yellow Card stating my symptoms as being caused by AZ.
Around the same time, a very healthy aunt died of a brain aneurysm hours after she was vaccinated.
I've refused all further boosters, and have never had Covid.
I still meet up with friends and family as I did before Covid. I make sure to carry hand sanitizer with me and use it often when out and about. I also take vitamin D3 every day and use a saline nasal wash (Neti Pot)
Thankfully the oedema and neuropathy eased about 12 months ago and my toenails have grown back.
Hello william-Indo - I felt, like you, that a lot of us were forced into taking a vaccine which was not really properly tried and tested and many of us have suffered as a result. I do hope your neuropathy will eventually get better or at least not develop any further. That is what I am hoping for me.
I agree with your doctor that there are now so many mutations of covid the efficacy of vaccine is probably very low.
Hello Kari1961 - So good of you to get in touch and I appreciate it. You have had a very nasty time as well and I was so sorry to hear of the death of your aunt. I follow much the same things as you suggest and I do hope that eventually - now I am not getting boosters - the neuropathy may go away or at least not get worse. Good Wishes
I had a horrible reaction to the Johnson and Johnson vaccine in April 2021. I had the shot at about 4pm. I felt very warm and I felt like I needed fresh air. I got home I vacuumed, folded clothes, made dinner and everything seemed fine.
Woke up at midnight with the worst headache I ever had (and I have very frequent headaches) it was above my right ear. I couldn't move. My legs and arms felt like concrete. I just prayed. At about 8am the headache subsided and I got up and walked around. I have never had another vacinne since and I won't.
I feel that I have been on a downslide ever since. Bad headaches, balance issues, insomnia and no energy. I have not seen many friends or family and still wear a mask. My retirement is nothing like I had planned.
I am 67, ET Jak2 positive and still on baby aspirin..2 per day. I was diagnosed in October 2014. Confirmed by bone marrow biopsy in January 2015.
My platelets last week were 878. The plan is . I reach 1000 I will do Pegagus Interferon. I'm very scared. I do not do well with medicine.
So you are not alone. We have to do what we are comfortable with. My goal everyday is to do the best that I can. I have my to do lists and I hope to cross off a few things everyday. If not I rest and relax. Maybe have a jama day.
Dear Janet 123 - Oh you poor thing. You have suffered badly and certainly this is not the way one hopes to feel in their retirement. I had not been diagnosed with ET Jak2 at the time of my first vaccine although high platelets were starting to be investigated. I really feel that the vaccine brought the ET forward as the AZ one disrupted platelets. I will certainly not have another as I have heard so many adverse reactions. My own daughter (called Janet) had very mild asthma years ago but has stopped getting the vaccine as it made her asthma much worse. As someone else who replied to me said there are now so many variants of covid it is impossible for one vaccine to cover all these satisfactorily.
I do hope you will improve as time goes on and you will get stronger. Thank you for contacting me and all Good Wishes
The JJ and AZ were both adenovirus type vaxes. It seems this tech is not well suited for Covid vaxes and both are off the market.
Your symptoms could be MPN related but balance issues can be of neuro origin esp if it started after the vax. I suggest you discuss with your Dr a full auto immune check up (I've posed on the tests I got) before starting any IFN.
Like you Jelbea, I too had the Astra zeneca vaccine at the start of covid. Terrible headache , unable to move my arm due to pain shooting up its length. Pain remained in shoulder and arm for 3 months and I still have some pain occasionally. Advised to report the issue to NHS via yellow card. No vaccines since as Gp worried my ET Calr+ was a contributory factor in the reaction. Continuing with careful handwashing and sanitation when out .
Hi myllo - Thanks for your response and I am sorry to hear that you too suffered badly with vaccine. I will certainly not be getting any more boosters and hope the neuropathy will perhaps improve or at lease not worsen.
I do hope you go on satisfactorily and I wish you well in your ET journey
I had the covid vaccine on Monday, I wasn’t going to have it as it messed with my blood counts last time, however, doctor from Guys advised it. I was fine after it until Tuesday afternoon when I started shivering and aching, then jot, then cold again, it lasted about 12 hours. Also I forgot to ask which one it was as the person vaccinating was someone I knew and hadn’t seen for years and we were too busy gossiping!
Hi lizzziep - I do hope you are feeling back to normal again. It was nice for you to meet up with an old friend. If you continue to have boosters I hope you will not experience a bad response in the future. Good wishes
I too had the AZ at the start of covid. Felt pressure by the govt, bbc death rate figures at the side of the screen 😳 and my elderly mother’s fear of seeing her family contracting covid and dying on her own 😔 Terrible headache and aching body for 3 days. After a couple of months of dizziness, aching arms and generally not feeling great I rang my gp. Feeling guilty taking up precious nhs time. She recommended bloods and I was diagnosed with pv jak 2 positive. I’ll never know if it was AZ gene therapy that brought me here. There’s not much I can do about it now except no more covid jabs for me. This is the first time I have spoken to this to anyone but my husband and close friends.
I’m not anti vax generally but I do think we were badly led and advised and that many people’s trust in the nhs, WHO and the govt of the worlds have been irredeemably damaged. Sarah
Dear SarahPV - I am so sorry to hear that you too have suffered with AZ. I also feel a connection between AZ and my diagnosis shortly afterwards with ET Jak 2. I was on the way to that diagnosis but I feel that the AZ made things worse a lot more quickly. I appreciate you telling me as I see you have not discussed this much with others. I have felt the same and only discussed it with my sister and daughter. My husband died 7 years ago and I miss him so much as he would have been a wonderful caring support in my present state.
I agree that our trust in these large health organizations has been tried to the limit and I feel that there will ongoing problems as a result of these vaccines for very many years to come.
I see that EP guy has contacted you and hope this will help as he is so knowledgeable. I send best wishes that you may be able to throw some light on your ongoing symptoms and get improvement.
i am very surprised you were given the Astra Zeneca vaccine! I was told by Guys Hospital not to accept the Astra Zeneca, I had to have one of the MRNA vaccines.
Dear Garstongal - You were lucky to get the advice from Guys. Here in Northern Ireland I am afraid we are the poor relations when it comes to many things - not least medical advice. We certainly did not get any guidance at the start of the vaccination programme and some, like me, have ongoing suffering as a result. I hope you keep well
I do remember wondering at the time whether it was because the AZ vaccine contained spike proteins of the actual virus whereas the MRNA ones didn’t.Who knows?
I'm surprised AZ is still available anywhere. Both AZ and J&J are adenovirus vector vaxes. Adenovirus causes common cold, but these adenos are de-activated and serve only to get the active Covid vaccine bits into the body's cells. It was a promising idea.
But blood clots were found to be a risk for these two vaxes. So the other types are now recommended by most agencies.
The AZ vaccine HAS been removed from use. My posts were merely in response to the people who posted that they had been given the AZ vaccine and thought it had led to subsequent health problems.
Good point. They announced this last week (May 8 '24):
"AstraZeneca has begun the worldwide withdrawal of its Covid-19 vaccine due to a “surplus of available updated vaccines” that target new variants of the virus."
They qualify the reason for withdrawal as other than its risk. I recall reading it recently remained in use in some world areas. It is more difficult to update its variant match vs mRNA or protein (Novavax).
I must say having histamine intolerance I was incredibly vigilant re covid vaccines.
I discovered after much searching that the Astrazenica vax consists mainly of l - histidine ( a precursor to histamine) I think if I’d had that one I would have been in dicky’s meadow.
I can’t help except to offer sympathy and understanding of what you are experiencing.
Hi Louise - Thank you so much for writing to me. There was so much pressure to be vaccinated and of course we were all so hopeful that we might get back some normality in our lives. The problem is that those of us who are still suffering ongoing pain and discomfort have no come back at the powers that be who caused it😒.
I really posted on here to find out about others who have gone through this and also to perhaps warn about the negatives of boosters. I do not believe that the vaccine now can help that much to protect as there are so many Covid variants around and it is always changing.
Anyhow thank you so much for your sympathy - it means so much - and I sent kind wishes back to you.
I have chosen not to get anymore. After I got the booster November 2021, my wbcs started to climb. And they never got better. I felt horrible after it, because I had also had Covid that previous August. Nothing ever got better it was like it caused so much inflammation then it flared my MS which I didn’t know I had at the time. I know this all may have nothing to do with the vaccine and usually I am pro vaccine, but I am scared. Just seemed like things were going great then the bottom fell out. Only thing I can attribute it to. I asked my oncologist who is my friend if he is getting another one and he said no. But I am on interferon, in my mind hoping it wards off all viruses.😀. But if you are high risk or your doctor thinks you should get it that is a different story. I think this is such a personal decision. And if they told me I NEEDED it, I am not sure what I would do. But I know I have had Covid at least twice, so hoping I have some natural antibodies. Good luck with your decision.
Hi KLCTJC - Thank you for your response. I am so sorry to hear what you have suffered after the vaccine in Nov 2021. You have enough suffering with MS and your MPN without that on top.
My MPN specialist - when I told her about the neuropathy getting worse after every booster - told me to think very carefully about getting any more so I took that as a no and have not had any vaccines since and will not do so. I have seen to many friends and family members suffering after these vaccines which I do not feel can be very useful at the moment as there are so many variants around and Covid is always changing.
Sending you good wishes for your ongoing health problems and again thanks.
I too am 82 and, after 3 vaccinations, decided not to have any more. The first 2 were Astrazeneca, and the third Moderna. After the last I had a reaction but not extreme - my arm hurt and I felt as if I had 'flu'. I thought no more about it until a week or so later I had a blood test before seeing my consultant for the 3 monthly face to face. I got a phone call from her dept asking me to go to the Blood Infusion suite at my hospital. I did not see my haem but another who told me there had been a concerning change in my blood figures (I didn't ask what change, stupidly.) I was asked other questions but didn't think to relate it to my vaccination. I was given another test and told the blood was improving and that was the end of it.
When I told my consultant haem, she said it was up to me whether I continued to have anti-Covid vac. I decided not to have any more, I have not changed my life-style but I did pick up Covid last Oct. I felt bad for about 4 days but had no ill effects afterwards. Sallie
Dear Sallie - Many thanks for your response to my post. I think you have taken a wise course in not getting any more vaccine and I feel that there was probably a connection in your change in blood values. As we with MPNs know any inflammation is bad and certainly after every booster my neuropathy (which I feel was caused by the first AZ vaccine) became worse which I put down to inflammation.
At 82 years we both know life is difficult enough day to day without making things worse😃. I send you good wishes.
My mum has ET but decided after all these years of Covid to remain unvaccinated due to the fact that we were hearing that the vaccines themselves had many side effects and could cause blood clotting. On the other hand I decided not to have it despite the fact that I suffer from asthma because I have allergies and was afraid I would get a reaction. After 4 years of wearing masks, my whole family got Covid and let me tell you.. It was the easiest thing for all of us to get.. Much bearable than the common cold the symptoms were so easy to deal with. Despite my asthma, my oxygen levels were higher than before with no added treatment than usual. My mum also recently had her testing done and her platelets were in the normal range. First time since she was diagnosed and on Hydreasyn medication. The only thing that was found lower than normal was her white cells so she will be visiting the doctor for it soon. I think you should not be afraid that much and continue life with some extra measures like washing hands and staying away from sick people. Covid has lost much of its power and has turned into a normal virus as I see it.
Hello PH256 - Thank you for your reply. I was not sure if your Mum had been vaccinated at the start as you say she decided "to remain unvaccinated". And then you said on the other hand you "decided not to have it".
I will certainly not be having any more vaccine as I have surely had ongoing suffering from the neuropathy from my very first jab, and worsening after each booster. I did not relate the two at the start as I was beginning to be investigated for ET.
I am glad you found covid so easy to get through. Unfortunately that is not the experience in my family circle and friends. My daughter who had very mild asthma only rarely has ended up with much worse asthma and many ongoing long covid type symptoms. My son - very strong and active - had covid and shortly afterwards had a severe slipped disc which is noted to be one of the aftereffects of covid. At first he was told he would require spinal surgery but with very good physiotherapy his back is now stable. Two other members of the family - sisters in their twenties have had ongoing heart problems after covid. One of them who is a doctor and worked in A&E throughout the pandemic has had to give up her much loved job and transfer into research type work.
I have managed to avoid getting it so far and as I have various ailments as well as ET I hope I will stay free of it. I do hope your Mums ET is stable and she is keeping well and I send you good wishes and thanks
Hi Lilliegarden - I think you are wise not having any more vaccine. Certainly I suffered from the first one I had - AZ - and developed neuropathy which became worse after each booster. I also think it brought on the ET more quickly as the AZ vaccine interferes with platelets.
Good Wishes in your ongoing treatment and thank you
I had 2 AZ vaccines when they were both available at the beginning with no side effects. I decided not to have any more vaccinations once the virus was better understood as I do not need more auto immune issues and usually only accept vaccines that have been around for 10 plus years and are well understood. I don't believe I am high risk despite them always telling me my immune system is rubbish because I have ET. My only medication is aspirin so am lucky it was an easy decision to make.
Hi rebeccaxxx - I am so glad you had no adverse effects from your 2 AZ vaccines and I think what you say makes good sense. I think we were all looking for something that would give us back a normal life. However, whilst very many have benefitted from the vaccines there are also those of us that have a different story. I know I shall not be having any more and I am reminded every day by the burning pain in my feet and ankles what the vaccine did to me. I hope you keep well and thank you for replying
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