Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for December 2023

Help! anagrelide

Hi mpners,A bit of help needed, a balanced opinion on anagrelide please. I've an appointment tomorrow to decide on next treatment and there's lots of info on...

Hi mpners,A bit of help needed, a balanced opinion on anagrelide please. I've an...

Spanelmad

•5 months ago

15 Replies

I’m scared

F 21. Hi everyone, I’m looking for some opinions on what im going through at the moment. I have been having consistent high platelets and a constant note of...

F 21. Hi everyone, I’m looking for some opinions on what im going through at the...

beetamer

•5 months ago

7 Replies

Does anyone have experience/info about Lumbrokinase?

"Lumbrokinase (LK) is an enzyme complex with antithrombotic, antioxidant, antitumor, and immunomodulatory effects." International Journal of...

"Lumbrokinase (LK) is an enzyme complex with antithrombotic, antioxidant, antitu...

Greenlace

•5 months ago

6 Replies

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Scared about possible side effects of Pegasys!

Hi everyone. I have my haematologist appointment in ten days time and I’m going to ask for shared care with Guys hospital and the possibility of changing from...

Hi everyone. I have my haematologist appointment in ten days time and I’m going ...

Na56

•5 months ago

55 Replies

PV & Gene Editing for Sickle cell anemia

Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell...

Has anyone been following the latest news on treatment for sickle cell anemia? ...

ERei

•5 months ago

8 Replies

Appointments

It is almost 8 years since my diagnosis of PV. In the beginning I was a regular subscriber on this forum which together with attendance at seminars, I found...

It is almost 8 years since my diagnosis of PV. In the beginning I was a regula...

Fionnuaghla

•5 months ago

28 Replies

Good News: Pegasys finally working! Bad News: Pulmonary embolus!

First the good news: After 7 months of gradually increasing dosages, the Pegasys finally kicked in, as members of this forum told me it would. For months,...

First the good news: After 7 months of gradually increasing dosages, the Pegasy...

Minify

•5 months ago

12 Replies

Update after guys app

Hi everyone sending best wishes to you all hunter5582 I had my app with a lovely consultant at guys, my next app will be face to face with additional blood...

Hi everyone sending best wishes to you all hunter5582 I had my app with a lovel...

Dottiedot

•5 months ago

13 Replies

Hydroxyurea Labeling Updated With Information Regarding Interference With continuous glucose monitoring

Important article for those on HU & use continuous glucose monitors. According to the updated labeling, hydroxyurea may falsely elevate sensor glucose...

Important article for those on HU & use continuous glucose monitors. According...

ERei

•5 months ago

1 Reply

Besremi or Jakafi coverage on Medicare?

Anyone on here have Medicare coverage for either of these drugs? I just went online and see that the cost would be about $3,500 a year. Thanks!

Anyone on here have Medicare coverage for either of these drugs? I just went on...

Laluna5683

•5 months ago

9 Replies

The Next Frontier in Myelofibrosis Management- Eric Tam 3-8-23

This is from a continuing medical education activity that I completed today: I hope you find some useful, or at least hope-inspiring information in here......

This is from a continuing medical education activity that I completed today: I ...

PhysAssist

•5 months ago

8 Replies

besremi or jakafi

hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow...

hello community, My husband was diagnosed with P V about 6 month ago after pre...

Laluna5683

•5 months ago

23 Replies

Eating Grapefruit while taking Hydroxyurea

I have PV and have been taking Hydroxyurea for 3 years. I recently ran across some information online that one should not eat grapefruit while taking it, but...

I have PV and have been taking Hydroxyurea for 3 years. I recently ran across so...

Sheena2020

•5 months ago

10 Replies

Thoughts please on my blood results

PV Jak2 positive. My whites have always been high since diagnosis in 2017. I'm having my 2nd bmb later today. Do these blood results indicate progression to...

PV Jak2 positive. My whites have always been high since diagnosis in 2017. I'm h...

MCW22

•5 months ago

12 Replies

PV treatment follow-Up

I previous wrote to the community a few months ago. I explained that I am 57 year old male in excellent condition taking no medications except for 81 mg...

I previous wrote to the community a few months ago. I explained that I am 57 ye...

FlTodd

•5 months ago

5 Replies

update

I nearly finished update when I pressed something and it all disappeared.. Before my phone appointment with Guys this morning,I rang GPto check if Alelle...

I nearly finished update when I pressed something and it all disappeared.. Bef...

Mostew

•5 months ago

7 Replies

Post PV Myelofibrosis - One Year Update

PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood counts and a bone marrow biopsy, I was diagnosed with post PV MF. I was taken...

PV diagnosis - 2010Post-PV MF diagnosis - 2022 Last year after plummeting blood ...

marlenablue

•5 months ago

5 Replies

Rate of Decrease in RBC Count

Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, but lowered by phlebotomy to 922,000. I have started on Hydroxyurea. Are...

Recent diagnosis of MPN, all three counts elevated. RBC count was 1.2 million, ...

hsdale3

•5 months ago

11 Replies

Personal independence payment

Good evening, Quick question to my UK friends, has anyone been successful in claiming the personal independence payment due ET JAK2 positive?

Good evening, Quick question to my UK friends, has anyone been successful in c...

Katnap123

•5 months ago

3 Replies

b12 tablets

hi I’ve Pv and recently been given b12 tablets I thought b12 helped make red blood cells confusing or what ??????? I’d rather ask here than doctors 🤫😳

hi I’ve Pv and recently been given b12 tablets I thought b12 helped make red bl...

Badger1

•5 months ago

10 Replies

reply to Hydra question

hi I have been on Hydra for three years and drink tea and coffee and enjoy my chocolate without any problems.

hi I have been on Hydra for three years and drink tea and coffee and enjoy my c...

Countymeath

•5 months ago

1 Reply

Besremi and the heart

I restarted a moderate and steady 100mcg dose of Besremi this fall, after being off it all summer. (Most recent test showed my platelets continuing down but...

I restarted a moderate and steady 100mcg dose of Besremi this fall, after being ...

Ovidess

•5 months ago

9 Replies

Tet2 and inflammation

A recent telephone appointment with Prof Claire Harrison has saved me endless research and 'looking for the answer'. I have ET and my driver mutation is Tet2....

A recent telephone appointment with Prof Claire Harrison has saved me endless re...

Janis12

•5 months ago

8 Replies

Tea and chocolate while taking Hydrea?

Hi all, Hope you are keeping well. I have been reading some mixed views on whether one should be drinking tea and eating chocolate while taking Hydrea. I have...

Hi all, Hope you are keeping well. I have been reading some mixed views on wheth...

JustKeepSw1mming

•5 months ago

24 Replies

New to Peginterferon - Any suggestions to help with bowel cramps?

I have only had 2 injections so far and experiencing frequent bowel cramps. I was kinda, expecting this as I do have some bouts of IBS following associated...

I have only had 2 injections so far and experiencing frequent bowel cramps. I wa...

Lyndjs

•5 months ago

17 Replies

Back on Pegasys

Went off of Pegasys for almost 6 weeks with my MPN expert's grace as I was in haematological remission from ET (with JAK2) on 45ug every two weeks. I had...

Went off of Pegasys for almost 6 weeks with my MPN expert's grace as I was in ha...

Planti

•5 months ago

14 Replies

Blood

After blood test for low red cells it was low iron ,urine test clear ,stool test a trace of blood Dr examined my stomach no tenderness didn't find anything...

After blood test for low red cells it was low iron ,urine test clear ,stool tes...

ChillyAsh34

•5 months ago

2 Replies

Mabellucie

Just read there will be a train strike on the 8th December. I live in The Scottish Borders so looks like needing to drive in.

Just read there will be a train strike on the 8th December. I live in The Scott...

Mabellucie

•5 months ago

1 Reply

Moving toward disease modification in polycythemia vera

« In this article, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free,...

« In this article, we provide an overview of the current and evolving treatment ...

Manouche

•5 months ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2023

Help! anagrelide

I’m scared

Does anyone have experience/info about Lumbrokinase?

Scared about possible side effects of Pegasys!

PV & Gene Editing for Sickle cell anemia

Appointments

Good News: Pegasys finally working! Bad News: Pulmonary embolus!

Update after guys app

Hydroxyurea Labeling Updated With Information Regarding Interference With continuous glucose monitoring

Besremi or Jakafi coverage on Medicare?

The Next Frontier in Myelofibrosis Management- Eric Tam 3-8-23

besremi or jakafi

Eating Grapefruit while taking Hydroxyurea

Thoughts please on my blood results

PV treatment follow-Up

update

Post PV Myelofibrosis - One Year Update

Rate of Decrease in RBC Count

Personal independence payment

b12 tablets

reply to Hydra question

Besremi and the heart

Tet2 and inflammation

Tea and chocolate while taking Hydrea?

New to Peginterferon - Any suggestions to help with bowel cramps?

Back on Pegasys

Blood

Mabellucie

Moving toward disease modification in polycythemia vera

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