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.
742 questions
All These Rx’s For Our Issues In Here And My ET Seem To Have Bad Side Effects. Makes Sense As They’re Rx But Still, Some Gotta Be Better.
A myMPNteam Member asked a question 💭

What has least side effects?
I heard Pegasus Interferon but Googled that and it has some bad side effects also.

What about Jakifi? The others?

I’m stressed out as I already have big anxiety about taking meds and Rx.

But I (like all of us) will have to take something at some point.
I’m reading those who wait to treat with Rx generally end up with worsened progressed condition(s).

Seems it’s a game of Russian Rouette whether you take it or not.😰

A myMPNteam Member

Each of the choices we have to treat MPNs comes with a risk/benefit profile. This includes the options no not treat or to stick with aspirin & monitor. While it is normal to feel fear regarding MPN… read more

posted 6 hours ago
How Bad Is A Bone Marrow Test? Pain? Cost? My Hematologist Never Ordered One Bc Said The Blood Test That Found JAK2 Mutation Was Enough.
A myMPNteam Member asked a question 💭

But I’m told on here that an MPN Specialist would generally make you get one?

A myMPNteam Member

I had a CT-guided BMB to finalize a diagnosis of MF in April 2021. As a Radiologic Technologist, I knew I would have to lay very still. I chose to have sedation (propofol) to not be tempted to move… read more

posted 2 hours ago
I Was Diagnosed With PV Recently. I Cook A Great Deal, Using Cast Iron Cookware. Should I Be Changing My Cookware?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Thanks, Steve - I think I saw the same or a similar article and statistic - I am off to Costco today to find some new cookware...now I am concerned about the PTFE in non-stick pans - anybody know if… read more

posted 11 hours ago
Anyone Have Fingernails Turning Under? And Spooning A Bit.
A myMPNteam Member asked a question 💭

I was diagnosed about 10 months ago and I’m on hydroxyurea. My platelets are 368, iron and haemoglobin are good.

A myMPNteam Member

My nails are a mess. Breaking, splitting and curving....must be related to ET as I never had any issues before.

posted 5 hours ago
Does Taking Aspirin Cause A Tight Sensation In Middle Of Chest. Started Only When Lying Down At Night, So Stopped But Now Happening Daytime
A myMPNteam Member asked a question 💭
A myMPNteam Member

aspirin is good for thinning blood for first treatment for ET but can have reactions to other meds you may take. Your Doctor or Pharmacist should have recommendations

posted 9 hours ago
Has Anyone Noticed Fingernails Turning Under And Some Nails Spooning?
A myMPNteam Member asked a question 💭

I have been diagnosed ET JAK2 and on hydroxyurea for 10 mo.
Platelets 368. Some of my fingernails are turning under a bit and spooning…..iron and hemoglobin are good.

A myMPNteam Member

Thnx Alyce.

posted 1 day ago
Anyone Diagnosed With ET That Later Mutated To PV?
A myMPNteam Member asked a question 💭
A myMPNteam Member

I was diagnosed with ET in 2018. I was them diagnosed in 2019 with PV

posted 18 hours ago
Is B12 In A Multivitamin Likely To Increase Hematacrit?
A myMPNteam Member asked a question 💭

I have PV (with hematacrit a little too high) so stopped taking a daily multivitamin which doesn’t contain iron but does contain B12. I have read recently that B12 can raise hematacrit, which is why I stopped taking it. Does anyone know if the amount in a multivitamin is likely to raise hematacrit?

A myMPNteam Member

Just Google: B12 and hematocrit and you will find a lot information

posted 2 days ago
How Do Beverages With Caffeine Affect Your MPNs?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Usually 1 cup of coffee in the morning, maybe another around 10 am. Have been waking up with really bad headaches....helps a bit.

posted 12 hours ago
Is It Common To Experience Extreme Muscle Aches After A Workout That Would Otherwise Not Be So Intense? I Love Exercising, But It Wipes Me.
A myMPNteam Member asked a question 💭
A myMPNteam Member

I can’t go running any longer as I get extreme headaches from it, but other exercise I like (tennis, pilates, hiking, walking) I am able to do like before. I think it is b/c with continuous cardio… read more

posted 2 days ago
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