I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and I’m tired. At work I have issues with instant recall of new laws and procedures.

🌟Anyone familiar with this
Says it’s a revolutionary specialized treatment for chronic infections, cancer, blood disorders, vitality, longevity, etc.

Apparently, many ppl do this worldwide for multiple reasons.
Reports say no known reported side effects and safe for all ages.

🌟I’m quoted it’s about $8,000 total, told the stem cells last for your life and they’re from umbilical cord blood with NO DNA from healthy babies and mothers
Said they’re tested to be safe and thankfully non- Covid… read more

Many of us myself included have said we noticed changes in our bodies and self and symptoms long before we were actually diagnosed.

This bothers me bc I want and need to know, as do we all.

It’s wrong to go by the date we were diagnosed.

Anyone? Thoughts?🤔

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.😰

for the last 2 years I have been working out at the gym 90 minutes for 5 days a week to get fit and now I am. after being diagnosed with PV last month, I have some concerns wheather working out for 5 days a week can be bad for me or not.
I am 42 and feel very energetic and want to be a fitness coach so I am really looking for a science based recommendation about this.
Thank you

Any advice greatly appreciated. I currently have high platelets, red cell count low and white cells high. With this i have severe itching all over from being warm, to the point I could rip my skin off. Red rash around the neck and chest that becomes worse when I get warm. Hema/onc sent me for Bmb as he said I have all the symptoms of jak2 mutation, Bmb came back OK, anyone else in this situation that just has to get on with it as the cause is unknown so no medication can be given to lower… read more

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

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