High Platelets

My Dr discussed Hydro and Peg, but when I asked what she would do in my case, she said Peg because while Hydro absolutely brings down platelet levels, Peg has the additional benefit in some patients to prevent the ET from going into the more dangerous fibrotic mode of the disease. Of course no guarantees and many folks are on Hydro for life with no new progression. I did see that word mentioned a few times in my bone marrow biopsy (which my Dr said I do not have at this point) so maybe the fact that my platelet levels were rising so fast made me a better candidate for a more aggressive treatment. My levels went from 600 to 950 in four months. So after my first month on weekly Peg injections, I came down to 900...I'm taking that as a win as it stopped the creek from rising. We'll see next month!

Most seem to start taking Hydroxyurea and low dose aspirin when first diagnosed with ET JAK2. This medication is inexpensive. What was your doctor’s reasoning?
Best wishes for your journey. Eileen

Younger people are turning up more frequently with MPNs, and research is giving this a lot of attention. Hopefully this will lead to better new therapies!

Eating heart healthy, maintaining a good weight, and getting regular exercise to maintain circulation is good for everybody, especially people with ET. Whatever can lower your overall clot risk is good.

But none of that will lower your platelets to normal levels. There are lots of scam artists out there willing to tell you otherwise to get your money.

Women in childbirth years are increasingly being prescribed Pegasys because it is safe to use while pregnant. HU is not. Maybe chat with your doc about this? It doesn't come up with us older ladies.

Hello. I'm 36 yo female. I was diagnosed with ET as well about 1.5 years ago. Today my WBC had come down to 11.4 and platelet count is 773. My doctor started me on HYDROXYUREA 500 MG today. I do have a history of DVT's so I have to take baby aspirin everyday. My doctor doesn't understand what caused this disorder as it went unnoticed for many years through another health care provider.

I've never been on chemotherapy in my life until today. I have had 2 blood transfusion in 2016. From what I'm reading as I research this medication and more about ET is that there is no cure and I'll have this disorder the rest of my life and it typically happens to people aged 60 or older but can happen to younger people. Has anyone made any changes to their lifestyle/diet and seen a decrease in the platelet count? Any suggestions?

I hope you will continue to update us on your experience with Peg. I hear it takes longer to work, though people respond at different rates to all these meds.

It took HU over a year to move my platelets from 800 to 400s. I am very stable and satisfied with things at the moment, but all of the oral meds for ET can stop working at any time, so would be helpful to know how Peg affects older people over the long haul.

One of the fellows I talked to in the UK was moved from HU to Peg at age 75. Over there, they get it free from the NHS if HU stops working, but mental health screening is done before Peg is prescribed, and patients receive anti-depressants as needed to alleviate side effects.

Thank you for posting!

Great post. I'm 67 and recently diagnosed with ET and Jak2 mutation. My Hemo Dr started me on weekly injections of Pegasys 1/4th vial. I went from 951 to 900 in one month. May need to increase my dose as they wanted to see more movement. Will wait to see next month's number. I seem to tolerate this dose so far ok. A little sleep disruption, but not as fatigued. Main hope is that it stop the progression. And yes, tier 5 medication...yikes $. Blessings to all on your recovery journey!

Bone marrow felt like a quick bee sting for me. Over in 10 minutes. I would have gone back to work, but they gave me Ativan.

Bone marrow biopsy confirms diagnosis and measures any fibrosis in the bone marrow. Gives the doc an idea of your overall marrow health.

Some ET patients (24 percent or fewer?) progress to a more serious disease, myelofibrosis. As I understand it, interferon/Pegasys is the only treatment that researchers think MAY stop progression in some patients.

However, Peg is prohibitively expensive for a lot of people, and it seems to be less well tolerated by older patients. My doc said she would not prescribe it as a first-line drug for anybody over 60 because it causes acute depression.

But I hear from some older patients that they feel fine and that doctors are dosing at lower levels to alleviate side effects.

Worth discussing with your hemo?

I was DX: CALR platelets rose to 915. Still taking .81 aspirin 1000 mg/day of Hydrea added the past 4 weeks blood work every 2 weeks. Platelets down to 685. I’m no longer nauseous, or headache still a little fatigued. Thankful treatment has begun

I was told it was a painful procedure. I was pleasantly surprised.

Thanks, I didn't know that....