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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.

Top 10 Search Results for "getting started on mympnteam"

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Top 5 searches:
Is MF The Cause Of Increased Platelets?
A myMPNteam Member asked a question 💭

My blood test showed platelets 904,000
The results of a bone marrow biopsy showed that I have myelofibrosis
Genetic test results showed that I was positive for the CARL gene mutation
Yesterday the doctor concluded: MF. (The doctor explained that my platelets were high due to MF)

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A myMPNteam Member

Excellent resources- I think it does - I have PMF - primary MF but have thrombocytosis.

PV Drug Therapy?
A myMPNteam Member asked a question 💭

I was diagnosed with PV 9 months ago and am trying to get up to speed. Just discovered myMPNteam. I’m curious for those that have been dealing with this for longer, at what point is drug therapy recommended? My doctor said it was preferable to do phlebotymys to keep HCT below 45, 40 even better. But as I read some of the stories here I see many people on drug therapy. Appreciate any wisdom

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A myMPNteam Member

I was on Hydroxyurea and was having a lot of Phlebotomies. When switched to Jakafi I no long needed the Phlebotomies, but my blood counts tanked. I became Anemic and was on the verge of… read more

Can Someone Explain Teams?
A myMPNteam Member asked a question 💭

I joined this site not too long ago and MaryAnn and others have been so kind and welcomed me right away. I'm wondering if someone can explain the whole teams concept and how it works. Thanks.

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A myMPNteam Member

Thank you so much MaryAnn.

Where Do You Get The Latest Information On MPNs From?
A myMPNteam Member asked a question 💭

Check out the myMPNteam Resource Center if you need a place to start - https://www.mympnteam.com/resources

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A myMPNteam Member

HealthUnlocked

Can Hydroxyurea Cause An Increase Spine Inflamation (L4-S1)? Experiencing Butt And Leg Pain.
A myMPNteam Member asked a question 💭

I was diagnosed with ET on June 2,2023. Started on 1000 mg hydroxyurea (500 twice a day). My fatigue is getting better but my butt and leg pain has been getting worse. Wondering if this is a side effect of hydroxyurea or if my spine problem is getting worse. I can't get in to see the spine specialist until October.

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A myMPNteam Member

Hydroxyrea wouldn’t cause you leg or back pain.
I have a bad back problem with pain everyday its arthritis

I Started Besremi Yesterday, Does Anyone Else Use This?
A myMPNteam Member asked a question 💭

I have ET jak2 positive. Have been taking HU 2x daily for ovver 2 years. I developed leg ulcers in December, so now the dr started me on Besremi.

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A myMPNteam Member

Olvatam róla egy pozitiv cikket

Getting Ready To Start On Hydrea. Any Tips For Adjusting To The Medication, What To Expect, Etc.?
A myMPNteam Member asked a question 💭

PLT 1040, WBC 11.8, not anemic (yet haha)

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A myMPNteam Member

Hi Laura, I was really worried when I first went on Hydrea as well, because it is Chemo. I've been one year on it, started 1000mg/day and went down to 500/mg day, with 1 -81mg aspirin, and BP med for… read more

I Have ET And I Repeatly Get Shingles I Have Had The Shingrex Vaccine But Still Getting Them Has Anyone Else Experienced This
A myMPNteam Member asked a question 💭
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A myMPNteam Member

Dear Kathyryn,

Shingles being the reactivation of varicella-zoster virus (VZV), the same virus that causes chickenpox, it is usually linked to our immune system being a bit dysfunctional. MPNs can be… read more

Treatment For Sore Mouth, Tongue, Lips?
A myMPNteam Member asked a question 💭

I Started hydroxyurea in May. A few days in the last few months, I felt my mouth burn… rinsing with baking soda helped and it went away… now 3 months later, my mouth and tongue are quite sore and I need to vaseline my lips frequently…am worried about getting cankers!…the baking soda rinse is barely containing the soreness. Eating Yogourt and soothing food helps, but only temporarily….any treatment ideas?

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A myMPNteam Member

The doctor can give you a prescription mouthwash

Is There Anyone In Northamptonshire Please?
A myMPNteam Member asked a question 💭

Hi everyone
This is my first post on here. I hope you don’t mind me adding you to my MPNteam. Looking forward to hearing from others with a MPN especially those local to Northampton.

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