Myeloproliferative Neoplasms Questions and Answers | myMPNteam

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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
902 questions
Why Is Plateletpheresis Not Done Regularly For ET/PV
A myMPNteam Member asked a question 💭
A myMPNteam Member

I’ve never heard of it

posted March 21
Hi I Gave ET With Jak2 Mutation M On Hydroxycarbamide 500 Mg My Platelets Are Still High How Long Would You Think I Will Be Taking This For
A myMPNteam Member asked a question 💭
A myMPNteam Member

There is no cure however Pegasys Interferon can lead to remission

posted March 21
Any Extra Precautions In Sun On Hydroxyurea? I Like To Go Out In The Sun And Sunbathe And Watch Softball Games. But Now I’m Afraid.
A myMPNteam Member asked a question 💭
A myMPNteam Member

I’m walking fear with most nowadays bc of the ET

posted March 21
Q.will Hydroxyurea Cause Stomach Ulcers 2. Will Hydroxyurea Will Get Fever Which Makes Discontinuing Of Drug
A myMPNteam Member asked a question 💭

How many weeks we can see results from hydroxyurea
Is anagrelide is going to stop
Hydroxyurea will lead anaemia for using of drug
At what conditions hematologist stop hydroxyurea
We have only option hydroxyurea so
Thank you
How to treat ulcers caused by hydroxyurea

A myMPNteam Member

if you start on pegasys ask to take both and see how your body react the better it works the more you can take less HU , this means lots of bloodvalue control

posted March 24
Hi Guys How Long After Diagnosis Of ET Did You Get A BMB Or Do You Actually Need One?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Kelly I would ask for one sooner to get confirmation of the diagnosis. My husband was initially told he had ET because that’s what his symptoms pointed to. But when they did his BMB he was diagnosed… read more

posted April 1
Can I Take Cod Liver Oil With Vit. A?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Thank you.

posted March 22
Anyone Interested In $175? Https://www.pinpointpatientrecruiting.com/ Pinpoint Patient Recruiting Has An Opportunity
A myMPNteam Member asked a question 💭
Anyone Drink Quinine (tonic Water) To Help Reduce Platelets?
A myMPNteam Member asked a question 💭

I have ET, Jak2 pos.

A myMPNteam Member

Last night I drank some ginger ale to settle my stomach. By bed time I could feel the tingling start to leg cramps due to the carbonation. I wondered if the arnica oil I use on my bad hip could help… read more

posted March 18
With Myleofibrosis, How Does A Doctor Determine Which Medicine To Choose
A myMPNteam Member asked a question 💭
A myMPNteam Member

I switched from Jakafi to Ojjaara when my spleen enlarged and my red blood cells were dropping. Since i switched to Ojjaara, my spleen reduced to normal and my hemaglobin is doing well. Good luck with… read more

posted April 23
Doc Want To Switch Me From Pegasys To Inf-alpha...any Experience Here?
A myMPNteam Member asked a question 💭

I'm on pegasys 135 since December and after an initial drop, my counts are back to their initial levels
Despite my mpn consultant, which is abroad, told my hemae to just wait at leat 6 months to see how it goes, my docs here (I live in a different country) are rushing to conclude the treatment is not effective, and don't want to wait as told them
They are thinking to escalate to 180 for the next two months, and if nothing happens, drop it and then they said that based on current research… read more

A myMPNteam Member

I am not sure where "here" is, but it is a universal truth that assertive patients receive higher quality care. Passive patients do not. This is true everywhere. We have to be educated about our… read more

posted March 12
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