I had two Pfizer vaccine shots in the spring of 2021, a booster in Nov. of 2021 - and then actually had a very mild case of Covid this past summer (2022). I get a flu shot every fall and I’m in general good health so am not sure I need another Covid booster at this point. So I’m curious what others are doing.
Nope never had the first one as was still trying ti determine what was wrong . Then the clots started on people with shots already had clots
I'm like 7up never had it never will its gene therapy not… read more
🌟Anyone familiar with this
Says it’s a revolutionary specialized treatment for chronic infections, cancer, blood disorders, vitality, longevity, etc.
Apparently, many ppl do this worldwide for multiple reasons.
Reports say no known reported side effects and safe for all ages.
🌟I’m quoted it’s about $8,000 total, told the stem cells last for your life and they’re from umbilical cord blood with NO DNA from healthy babies and mothers
Said they’re tested to be safe and thankfully non- Covid… read more
Tatiana, I was only sharing my single person experience. I'll add, I was quite sick when I had Covid.
The trial for immunity measured 52 different 'proteins', antibodies related to sars covib2..And… read more
My husband has Jak2 ET. He’s currently sick w/COVID for 2nd time in a month. Took Paxlovid and symptoms got better. Now sick and positive again. Is ET considered an immunocompromised disorder? Seems regular docs don’t know a lot about ET.
Dear Debra,
Some doctors tend to minimise risks and use absolute terms. In absolute terms, someone with ET only and without treatment might not fit the bill of being immunocompromised if by… read more
I have PMF and contracted Covid twice
Each time had the 5 day course of 8 tablets per day and on each case improved my condition rapidly!
I would have again , however hope I don’t getCovid again.
… read more
Feeling like someone was stabbing my right eye with a sharp knife. I ended up in hospital and being seen by a neurologist. he is treating me for ? hemicrania or maybe sinus venous thrombosis? I had an MRI brain yesterday with contrast to look at the blood vessels. I am taking indocid with some help but pain is still there to a degree. I have a history of clots in the feet and already take a blood thinner, eliquis, clopidergrel, which is like aspirin, and hydrea. Has anyone else had a similar… read more
Hi all and thanks to everyone who responded. Had my review with the neurologist and the MRI showed nothing. I have been diagnosed with trigeminal Hemicrania. Headache has finally subsided. Cause for… read more
I saw a MPN specialist who suggested that I try this. I'd be curious to see if others have done it and what the outcome was.
hi stopped with hu when changing to interferon medication , the more blood counts show ( by several blood test ) the interferon worked the less hu i took , this was done under guidance of a… read more
Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?
Went to oncologist appt today. Platelets have lowered to 751. Dr. prescribed hydroxyurea 3 times weekly. Concerned with my LDH level that has risen to 449. Has anyone else LDH level been a concern or even discussed?
Alcapella - Has your LDH gone down? As I said earlier I had been at 1,450 and stayed high for quite a while. After taking Jakafi for a while it lowered at one point to under 700 - it has been in a… read more
I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more
Hi, Genette. I've gained about 13 lbs. However, I will not go off of Jakafi, as it keeps me going one day at a time.
Diagnosed ET, JAK2, PLT966 WBC11.6, hematocrit 44.9. These are all trending up each lab.
I am 44 and considered low risk as i have never had a stroke but i do have symptoms including mild pain in left side, some tingling in my arms and feet on occasion, headaches, occasional blurred vision more than usual, night sweats, tinnutis, fatigue and very mild fibrosis in the bones. I wonder if my ET is becoming PV too with my numbers.
If you don’t have a MPN specialist, I would try to find one. They are the experts on MPN and they wouldn’t be able to tell you if you are progressing to PV