I’ve just received my flu and pneumonia vaccine and have experienced really nasty side effects. These start roughly 12 hours after the injection, feeling really unwell as well as chills and fever. I’m now almost 48hrs post vaccine and I’m still not right with my temperature spiking above normal and very sore arms. The same happened with the 2nd covid jab and the booster. I’m usually a really resilient person but these vaccines have left me bed bound for a day or two. Has anyone else experienced this? I have ET CalR mutation and inject Pegasys interferon once a week. I’ve never had any issues with vaccines previous to my diagnosis apart from mild side effects so I’m wondering if my extreme reaction might be to do with Pegasys? The feeling of being this unwell is uncommon to me, it’s much more severe than a cold more like a full blown flu. After my 3rd covid jab I felt acutely unwell for 2 days but my lymph nodes and generally feeling under the weather was about a week. The thought of feeling like this every time I have a vaccine is quite distressing. I welcome thoughts and experiences please.
Thank you in advance x
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JojoWonder
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I had a days worth of feeling crummy after the first two vaccines, but nothing after the booster. I also have ET with calr. Interestingly, my 43 year old son was in bed sick for a few days after the first two vaccines and a fever with a bad headache after the booster. He doesn't have an MPN.
Hello JoJo I can very much identify with what you describe as I have had some bad times after my vaccines this year and like you I am on Pegasys - I know after my first AZ I was very ill and as you say way beyond a bit of a reaction that many do receive feeling bit rough for a few days, I was what I call "scary ill" for many days totally out of action, well just really ill for seven days and a month after not right - and my consultant did think the mix of interferon and the vaccine just sparked a real storm in the immune system - so for my second AZ I spaced out treatment injection and the appointment for the vaccine and was much better and likewise for my third prime which was Pfizer I didn't inject for 10 days before going for it and held of injecting for another week after - and again although I was fluey and had one day in bed with the cold shivers for hours (a very interferon thing !!) it was ok and soon passed - so I think the key is not having your interferon anywhere near the vaccines but obviously chat to your consultant as to your individual circumstances. I will do the same for my booster in the new year and any vaccines going forward as yes they will be part of life for a time i think so we need to find the way round it. I have been fine tho with flu vaccine as I always have been for years whether my years on Hydroxy or the last few years on Peg, mine had been specific to the Cov vaccines -altho I still think thank goodness for them as it was a reminder to me how rough I may be if caught the actual virus so I balance the protection on that. All the best
This is all very interesting and what I wanted to hear really. It’s throughly depressing to think I’m going to be this unwell every time I need a vaccine for something. I’ll speak to my Haematologist about spacing out my dose as yours suggests. Today I feel better but I’m still only giving myself a 6/10. I have an active 3 year old so having these episodes is really less than ideal. I appreciate you coming back to me 😊
Good morning. What you’re describing is a reaction that many people have who don’t usually react to vaccines and the reaction is by no means extreme. I got leaky veins in my legs after Pfizer, a month with extreme fatigue where I couldn’t even make breakfast and severe anemia. All that is under control now , but my ankles are still dark because of the leaky blood. I have to wear double strength compression stockings now for the test of my life. A real pain! But I’m still happy. I also have ET CALR. Also, I would never do 2 vaccines at once. Doctors like to save time and money and are often needle happy. Better to wait 2 weeks in between. Take care and stay well. 🙂
Hello, I have just been diagnosed with ET, CALR, but haven't started medication yet. I had the Moderna booster over a week ago and had a bad reaction, fever, shivery, vomiting and extreme fatigue. Still not right. I had previously taken a quantitative Pfizer antibody test and had a very high level of antibodies. Did I catch flu at the pharmacy?
Hi Jojo, it may well be related to Pegasys but not necessarily.
I just thought I’d share my daughters experience for some balance.
My daughter who has no health issues had an extreme reaction to the second Pfizer vaccine. As you state, it started roughly 12 hours after the shot.
The symptoms were severe headache, night fevers, vomiting, weakness, loss of appetite etc etc. I think it’s reasonable to have short term side effects, we expect that, but it was how long these symptoms lasted that was worrying. She had to have a week off of work. You can imagine how she may be feeling about having a Booster after this experience!
I have PV and am Jak2 positive and I am on 9 hydroxycarbamide tablets a week. The first astrazeneca jab I still have a hard painful lump in my arm muscle but not at the injection site. Had the second astrazeneca jab in my thigh and have a hard lump in my hip, ten months later and the doctor has referred me for an ultrasound to see what it is. So I was reluctant to have the booster jab but I did, it was the Pfizer and the flu jab together I was booked in for my routine blood test three days later, I felt so ill and didn't feel better until nearly a month later when my consultant rang about my results she said I had an abnormal liver function and abnormal white blood count. This has never happened before and she has recommended that I don't have the two jabs at the same time in the future Can't say I am looking forward to having any further jabs but I don't want covid either, seems to be a lose/lose scenerio
Hi. I was really poorly after having my flu and pneumonia vaccines together a few years ago, and had never experienced anything like it before. I am not on interferon but Hydroxy and I have PV. When I had my 3rd covid vaccine I made sure that I had had my flu vaccine several weeks before and I seemed to be much better.
I have ET Cal R too. I had bad reactions to all three doses ( first two were AZ, third was Pfizer). I am only on aspirin. The Pfizer was the worst , like being hit by a train , the day after I had it I nearly passed out in the bathroom and only just made it back to bed. Everything hurt, felt sick and dizzy , headache , etc, BUT it did pass after 2-3 days and I was back to " normal" except for the sore arm which lasted about a week and was far more bothersome than after the AZ jabs . Not looking forward to another shot of Pfizer as my booster following that experience, but I will definitely be having it as COVID could obviously be so much worse. Hope you feel back to your normal self soon
I inject Peg every 10 days I was fine with flu jab but my 3rd phifzer jab put me in bed for 2 days with covid symptoms ( I know what those are like because I’ve had covid )
Hi, yes I had the exact same reaction to the Pfizer booster shot and I was sicker than a dog for 2 days. I totally believe its from the Pegasys shot. The Pegasys shot is supposed to assist the body with cancer and invading virus's. I had very mild reactions with the first 2 Covid vaccine shots and I was NOT on Pegasys. The booster shot was taken while I was on Pegasy's and what a big reaction I had. Probably the Pegasys and invading shots fighting each other. In the future you might want to go off the Pegasys prior to getting shots. I had the same delayed reaction from the drugs they put on prior to getting a colonoscopy.......very sick a day after. Wish you the best.......Kerry
I was very sick (significant fever, flu-like aches, pounding heart, misery, had to stay in bed....) after all three Pfizer Covid shots. Horrible. I have ET and take a Hydroxyurea pill daily. I dread the thought of having these reactions after future vaccines, but it is better than getting Covid. I have had the Shingles vaccines, pneumonia vaccines, and flu vaccines, and except for a sore arm, they were relatively easy. I hope you feel better soon.
Thank you to everyone who responded. Whilst I’m certainly not glad others have suffered in the same way I have it is reassuring to know it’s not just me. I’ve definitely got some things to discuss with my Haematologist at our next appointment. Stay safe everyone and have the best Christmas x
Unsure about MPNs and Pegasys specifically, but several of my (healthy) close family members were knocked flat for 3-4 days after each COVID-19 vaccine dose - I think it's just bad luck and some people reacting to them worse than others. I have PV and barely felt anything after any of the 3 doses, I think I just lucked out.
I had covid and I won't lie it was hell for 8 days but I pulled through with no long term issues. I am currently unvaccinated as I have done an immense amount of research on the vaccines and I do not trust them one bit. There is a ton of information out there about the high amount of deaths and permanent disabilities that have been attributed to the vaccines. I have to say that I don't understand why ppl continue to get the vaccines when you literally experience what it feels like to have covid just by having the vaccine itself? (Except for the cough) My question doesn't apply to anybody with MF and a low white blood cell count or people over 65.
I don't want to scare anyone but for those who truly want to know what I am talking about check out the VAERS website and have a look for yourself at the insane amount of horrible and very serious reactions that are happening in healthy people. It has now been proven that having the vaccines does not prevent transmission to other people so we can't even use that as an excuse.
In America we have been told relentlessly that all the vaccines are safe and effective including the Johnson and Johnson one. But as of 2 weeks ago we are now being told not to take the Johnson and Johnson one because of the risk of blood clots associated with it even in healthy people. What happened to it being 100% safe and effective? It was a lie.
People are making themselves sick by taking vaccines in order to avoid getting sick. It doesn't make sense to me. I may be forced to get the vaccine soon in order to keep my job and I am TERRIFIED.
Sorry to hear that you’re feeling so distressed by the possibility of needing to be vaccinated in order to keep your job clubdino. Anxiety around health is an awful thing to experience and ironically the kind of stress that can actually really negatively affect our health!
It’s always difficult to disregard our own anecdotal experience, it’s human nature to magnify the meaning of what we’ve personally experienced vs accumulated data.
To answer the question you asked “I have to say that I don't understand why ppl continue to get the vaccines when you literally experience what it feels like to have covid just by having the vaccine itself?”
My flu like side effects post vaccinations (I’ve had 3) were NOTHING like my experience of having covid itself. For me beyond 6 weeks of acute and severe covid symptoms, it has resulted in 20 months of disabling health issues, has completely upended my life, stopped my career, delayed life plans and made managing my health a full time job. There is improvement with long covid but no “cure” on the horizon. I’ve met many previously healthy people (no underlying conditions or MPN) who’ve had the same outcome post covid.
Every decision in life is a balancing act between risk & reward. In the past week alone I’ve been a very close contact of 3 people with covid, including my partner who I share a bed with, and haven’t contracted covid myself. I can only assume that my recent booster vaccination has protected me, so for me the risk of potential vaccine side effects is well worth taking.
Wishing you the best of health and hoping you find peace of mind with whatever risk you choose 💚
I hope you get better soon Sarah. At this point I am much too stressed to put my thoughts to paper and form coherent thoughts but I understand where you are coming from. To me the vaccine is russian roulette and I can't bring myself to play that game. It is believed (for now) that most ppl don't catch covid a second time. That may change with variants in the future but hopefully that means we are safe from further illness for now. I hope the new year will be kind to you. ❤
Unfortunately here in the u.k with the rise in the omicron variant I know several people who currently have covid for a second time. Luckily their symptoms are tending to be mild. Stay safe x
I have never had a reaction to the flu vaccine until this year when i doubled up on flu - pneumonia. The doc said people do not have a problem doubling up. Ooops! Both arms got quite sore and I felt like I had the flu. Cleared up in about 24 hours. Not sure that is in being on Pegasys but I won't double up like that again. I would note that I had almost no reaction to the first 2 COVID vaccines, but did react to the third (flu-like sx). I do want to get the Shingrix vaccine. We will see how that one goes.
I've just seen this thread. I have terrible muscle pain in hips, shoulders, knees, and really bad fatigue after all my Pfizer vaccines and it lasts over 1 month. It really makes me think i shouldn't be getting them. I do stop Pegasys for 7 days before the jab and 7 days after. Maybe a test for antibodies might be a good idea for some. All the best.
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