I developed Essential Thrombocythemia immediately following my Covid Vaccination and first Booster - lost 1 1/2 stone and platelet count shot through the roof to 1,000. Immediately put on Aspirin a day andHydroxycarbamide.
My life changed from then - awful symptoms but not sure if the drugs or the ET?
I always have cold numb and tingly feet - sometimes very painful at night and need to take a painkiller.
I was always such a fit and active person but feel so weary all the time. Not quite so bad in the mornings when I have to get my work done before I have to rest for a couple of hours in the afternoon as feel so 'blotto!' I then can manage to get our dinner and walk our dog. I often feel better for going out to walk my dog but sometimes I don't know how I drag myself around.
The medics in this country won't talk about side effects of the vaccine but in Europe the medics are talking more openly about the possible side effects of the vaccine.
Each day is such a struggle now and so much joy has gone out of my life because of this ET.
I am hoping to attend the Forum in December for MPN. It will be wonderful to find out more information if I can and compare notes with fellow sufferers.
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Happydolphin
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I'm sorry to hear about your diagnosis. I also have ET so I understand the symptoms you are experiencing. To me the fatigue is the worst. My aunt also got ET directly after her covid vaccine. (We are not blood related.) There was another person on here who experienced the same thing. I have read that ET may be caused by a defect in the immune system. Vaccines can temporarily lower your immune system so I wouldn't doubt that there may be a connection. The people here are very kind and will help you any way they can. Welcome.
I too was diagnosed after a covid vaccination but because I developed bilateral pulmonary embolism.I was on Hu and rivaroxban, but have showstopper Hu after every side effect on the book plus what they think is an allergic reaction.
Hello and welcome. Sorry to hear about the ET diagnosis. Others have noted their MPN diagnosis following a vaccine, but I do not know of any evidence that clearly links the two. There are reports in the literature of COVID vaccine-induced Immune Thrombotic Thrombocytopenia. It does not seem unreasonable to suspect that there may be a link to the vaccine. One of the things to know is that recent research demonstrates that we can acquire the JAK2 mutation early in life but the disease doers not manifest until later in life. The trigger for the underlying mutation to become a disease is not known at this point.
Both of the symptoms you report can be tricky to figure out since they can come from either the MPN or from the hydroxycarbamide (AKA hydroxyurea - HU). Sometimes the issues in the feet can be a MPN-related microvascular issue; however numb-tingly feet is also a HU adverse effect that you are supposed to report to your doctor immediately. Fatigue is the most common MPN constitutional symptom but also a common HU adverse effect. Sometimes the timing of when the symptoms appeared is the only clue.
It is important to review these symptom, particularly the numb-tingling feet with your doctor ASAP. Hopefully you are already seeing a MPN specialist. Unfortunately, most doctors, including hematologists, have little experience with MPNs due to how rare they are. MPN expert consultation is essential to ensure optimal MPN care.
Here is a bit of information on HU that you may find helpful
Thank you for that very useful information hunter 5582 - I was thinking about seeing an MPN Specialist - all our Haematologists left at our hospital but they have a locum now apparently so am hoping for a phone chat in January. I reported the feet bit to my Haematology Nurse who is the one I have my phone check-ups with but she just seemed to think it was nothing to worry about together with the exhaustion. There is a Forum by an MPN Team in Edinburgh in early December so am hoping enough people will attend so it will take place - I am planning to go and hopefully find some more answers. Thank you again for your comments.
There is no way that a locum can provide you with the consistent quality care needed for a MPN. The issue with the feet needs a more immediate assessment. While it may well be a microvascular issue, you would not want to ignore the chance that it is peripheral neuropathy resulting from HU. Pain is a warning that something is wrong. It is best to heed the warning.
Given the departure of all hematologists from your local hospital, it is clear that immediate referral to a MPN specialist is needed. It takes time to get an appointment. Suggest you not wait. Here is a list just in case you have not seen it. mpnforum.com/list-hem./
I do hope you get the chance to attend the forum in Edinborough. It is great to connect with others with MPNs and find information and support.
Hello .. thank you for sharing . I to have a recent diagnosis of ET .. not really heard the vaccine connection .. could you tell me what mutation you have .. I am CALR .. thanks Trudy
So sorry to hear your story. I do hope you or your doctor have reported this to your countries drug regulator, VAERS, Yellow Card etc.
I have also heard the covid vaccines can set off MPNs, as well as many other cancers.
Hopefully you can find an MPN specialist soon. Did you dr also check your vitamin and thyroid levels? Might be worth checking as these can also give you some of the symptoms you mentioned. Always get a copy of any test results so you can see what’s happening.
I too was diagnosed with ET 1 week post covid vaccine. I believe that my exposure to certain petrochemicals over time and the sudden change in immune response induced by the vaccine allowed my ET to begin to proliferate.
Was 38 at time of diagnosis, I’m 40 now - CALR mutation. Caught by routine physical.
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