@sdcgcarroll Sadly, you will not find a comprehensive list of symptoms and side effects because they vary widely from person to person. The most serious are clots or, in cases with platelets over 1,000, bleeding. Sometimes enlarged spleen. Meds are given to ward these off.

I'd say about half the people here have no symptoms or mild fatigue. The rest have intermittent headaches, bone pain, more severe fatigue, erythromelalgia, dizziness, or tingles in extremities. Among others.

ET is very poorly understood and understudied by research. Imo, brain fog and depression and kidney disease associated with blood cancers needs to be studied more in ET patients.

Symptoms sometimes come on with starting hydroxyurea. The meds get blamed, but it may be that the HU is being given because platelets are going up and it's ultimately the higher platelets that cause the symptoms. But no one knows.

HU alleviates symptoms for some. In others it causes diarrhea or constipation. It can also cause hair thinning and black stripes in nails. Too much causes bone pain. You'll hear lots of other complaints about it, too, and the FDA has a list of side effects a mile long.

I suspect there are psychological factors involved in HU resistance; nobody likes the idea of taking a chemo pill for life or of having an incurable blood disease. But I'm not a shrink.

Meds for ET:
--Aspirin to thin blood
--HU or anagrelide to reduce platelets
--Besremi or Pegasys injections if you can afford them and are under 40 or 50 reduce platelets and MAY lead to remission
--Jakafi is expensive and is used infrequently

ET gets far less attention than other ailments that hematology oncologists see. Most of us are middle-aged or elderly, ambulatory, we don't look or act sick, and our disease is advancing so slowly that probably something else will kill us. When a busy doc has to triage his time between us and the teenager down the hall with acute leukemia, guess who's going to get the most attention?

@sdcgcarroll do you mean clinical trials? There are trials, I have looked at them on a website. If I can find the site I will post. You might also follow the Healthunlocked website. Quite a few people on that site use an interferon for treatment. You might want to look into those drugs as alternatives to HU. I am on HU and it worked well to reduce my platelets. It took time, but that helped with some of my worse symptoms. Sadly, treatments may not help with fatigue. It really depends on the individual.