MGUS with Polycythemia Vera (PV)

Posted by stljack @stljack, May 17, 2022

Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my numbers. January of 2022 all my blood cell counts and hematocrit became elevated and have continued since. JAK2 test done in April came back positive. Now I have been diagnosed with PV. Is this possible? I am scheduled for another bone marrow biopsy tomorrow.

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Lori, Volunteer Mentor | @loribmt | Sep 8, 2022

In reply to @pmm "I am definitely cautious. The medical facilities here have relaxed precautions a lot. Masks are optional...." + (show)

In the end, it’s up to us to help ensure our own safety. I’m often the only person masked in the grocery store or out running errands, unless my husband is with me, then he’s masked as well.
It’s surprising that some medical facilities are mask optional! The goal is to protect patients who are at most risk. So far I haven’t seen that locally where I live. Recent visits to my clinic for labs still required everyone entering to wear a mask thankfully.
I just looked on the Mayo Clinic website and they’re still not allowing patients or visitors in without a mask.
Do you live in a part of the country where the Covid numbers are lower?

Patty, Volunteer Mentor | @pmm | Sep 8, 2022

No. I live in a part of the country where science is frequently viewed as frivolous over-caution.
😢
The Med school hospitals are still requiring it but several of the specialists I see as well as the Baptist hospital system have declared masks optional.

Lori, Volunteer Mentor | @loribmt | Sep 8, 2022

In reply to @pmm "No. I live in a part of the country where science is frequently viewed as frivolous..." + (show)

I feel your pain…😢

fishergramma | @fishergramma | Oct 1, 2022

I am also jak 2 positive as of 2019 and mgus since 201 3, now smouldering for a couple years. I just keep living pretty normally. Have a good dr. And live your life.

fishergramma | @fishergramma | Dec 27, 2022

I am nearly the same, mgus in 2013, pv in 2019. Still going strong with the help of Hydroxyurea and my onc.

chetalbin | @chetalbin | Dec 28, 2022

In reply to @fishergramma "I am nearly the same, mgus in 2013, pv in 2019. Still going strong with the..." + (show)

Hi, I have ET/JAK2 & Dr wants me to start Hydroxyurea 1 per day. I’m concerned about taking a chemo drug & the side effects. My platelet count is 681.

urbanciks | @urbanciks | Dec 28, 2022

In reply to @chetalbin "Hi, I have ET/JAK2 & Dr wants me to start Hydroxyurea 1 per day. I’m concerned..." + (show)

I have the same thing. I take 1 hydroxyurea 4 times a week and 2 pills on Monday, Wednesday and Friday. Platlet counts about 420 which my Dr is happy with. My count was up in the 900s.

chetalbin | @chetalbin | Dec 28, 2022

In reply to @urbanciks "I have the same thing. I take 1 hydroxyurea 4 times a week and 2 pills..." + (show)

Thanks for the info. How are the side effects?

kibbykyle | @kibbykyle | Dec 29, 2022

In reply to @chetalbin "Hi, I have ET/JAK2 & Dr wants me to start Hydroxyurea 1 per day. I’m concerned..." + (show)

Same here Dr. wants me to start Hydroxyurea and I have the same concerns about side effects. My Platelets are high and Iron is low having Phlobotemy monthly. I'm Interested in hearing from others who are taking this drug.

fishergramma | @fishergramma | Dec 29, 2022

In reply to @kibbykyle "Same here Dr. wants me to start Hydroxyurea and I have the same concerns about side..." + (show)

I've taken Hydroxyurea for 2 years now and have not noticed any side effects. My platelets count recently went up and have to increase my dosage. Better than a stroke!

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