Connect with others who understand.

sign up log in
Resources
About myMPNteam
Powered By

Questions & Answers

Get practical advice and insights from people who understand

Don't see your question? ask question
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.
View:

How Long Are You Sore After BMB?

How Long Are You Sore After BMB?

posted January 14
A myMPNteam Member

I was uncomfortable during the procedure but fine afterwards.

posted January 17

People Taking Jakafi. Side Effects? How Long To Take Effect? Does It Keep Hematocrit Numbers Down To Prevent Having Phlebotomies?

People Taking Jakafi. Side Effects? How Long To Take Effect? Does It Keep Hematocrit Numbers Down To Prevent Having Phlebotomies?

posted January 14
A myMPNteam Member

I read the study results for Jafafi for PV. For most, it did reduce the hematocrit and while on the trial participants were able to reduce the dose and have a short term discontinuance if their hgb… read more

posted 7 days ago

Hi - New Here - Thanks For Having Me. Does Anyone Have Any Resources / Experience About Ibruprofen Increasing Pain In MPNs? Thanks!

Hi - New Here - Thanks For Having Me. Does Anyone Have Any Resources / Experience About Ibruprofen Increasing Pain In MPNs? Thanks!

I've been prescribed ibuprofen for migraine and headaches, but find I get a sore back after taking it. This has recently flared up so significantly that my Dr sent me to Emergency Dept thinking I had could have a clot in my lungs. This was ruled out by Emergency Drs but I'm left with super painful left side of my back. Hard to lie down, bend down, do stuff in general and super exhausting.

Last night I took ibuprofen for it to try to have a better sleep and it is now significantly worse.

read more

posted January 12
A myMPNteam Member

Thanks Nick will see if I can source that in my country :)

posted January 21

How To Deal With This Disease?

How To Deal With This Disease?

posted January 12
A myMPNteam Member

Put it t the back of you mind and live the best life ever

posted January 23

MDS/MPN Overlap With Jak 2

MDS/MPN Overlap With Jak 2

Does anyone else have this? Get in touch if you do?

posted January 10

GM! I’ve Just Been Diagnosed With CALR+ ET. I Am 51 And I Am Really Anxious And Scared. I Don’t Have Enough Information About My Condition.

GM! I’ve Just Been Diagnosed With CALR+ ET. I Am 51 And I Am Really Anxious And Scared. I Don’t Have Enough Information About My Condition.

Need an easy article explaining the condition

posted January 9
A myMPNteam Member

Hi Nagla
These 2 you tubes videos of presentations by research doctors helped me a lot recently

Living with an MPN-

https://m.youtube.com/watch?v=KfzHpNi6R3g&f...

Calreticular mutation in MPN

read more
posted January 19

Effect Intermitted And Longer Fasting On MPN

Effect Intermitted And Longer Fasting On MPN

Is there any info about IF and 2/3 days fasting (only tea). NL doesn’t have any info about this. I have to start with med, but want to maybe postpone this.. try to create the best bloodwork possible..Is this possible via fasting! I know about the Mediterranean dieet. Pleas can you make me happy with an advise? Thanks

posted January 8
A myMPNteam Member

IF might affect glucose (amount of sugar in the blood) but not the blood cells (red, white, and platelets) that are central to MPN along with other types of blood cells (neutrophils, basophils): blood… read more

posted January 8

Is Schwannomatosis NF3 A Form Of Cancer?

Is Schwannomatosis NF3 A Form Of Cancer?

Currently going through radiotherapy as being diagnosed as Prostate Cancer, no painful symptoms, but could the schwannomas [benign tumours] I know I have, in that prostate area, thus be thought as cancerous growths? I have had Schwannomatosis NF3 since 1970, but not finally officially diagnosed until 2017!

posted January 7
Already a Member? Log in