Posts - MPN Voice | HealthUnlocked

MPN Voice

10,519 members • 14,521 posts

All posts for May 2024

Weight loss in PV?

I'd like to know if anyone else with PV has been experiencing weight loss. I was diagnosed back in 2015 and treated, first with phlebotomies, then with HU, and...

I'd like to know if anyone else with PV has been experiencing weight loss. I was...

sbs_patient

•17 hours ago

2 Replies

Today's update

Some potentially good news. Saw my PCP this morning and he went over all my labs. Counts for RBC are slightly high but he's not concerned as with PV counts...

Some potentially good news. Saw my PCP this morning and he went over all my labs...

HockeyFan47

•20 hours ago

Be the first to reply

Momelotinib

Good to hear that Momelotinib has worked for some on this site. In my case it pushed platelets up to c1900 from 1250, and WBC to c16 from 13. Gave it up on MPN...

Good to hear that Momelotinib has worked for some on this site. In my case it pu...

ExistentialNihilist

•21 hours ago

5 Replies

Want to take advantage of all our features? Just log in!

possibly nail melanoma and UTI infections.

Dear all, I have been having a UTI since 11 May. I was a day on intravenous antibiotics followed by 7 days oral antibiotics. Within two days of stopping the...

Dear all, I have been having a UTI since 11 May. I was a day on intravenous ant...

artydutch

•1 day ago

6 Replies

Leg pain

I noticed someone else mention pain in their legs. When I had et and mf I would have intermittent pain in my outside thighs. I was never sure if it was the mpn...

I noticed someone else mention pain in their legs. When I had et and mf I would ...

Scaredy_cat

•1 day ago

3 Replies

Sorry it has been a while with an update on Ruxolitinib

The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started...

The last time I wrote to you all was about 2/3 years ago when I started Ruxoliti...

wendycu

•2 days ago

14 Replies

Ruxolitinib - declining efficacy?

Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my...

Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the...

Rob58

•2 days ago

5 Replies

Possible side effect?

I started Pegasys just about 2.5 months ago. Dose 45 mcg. per week. No real side effects. Then just increased to 60 mcg. per week. Injected on Friday, and...

I started Pegasys just about 2.5 months ago. Dose 45 mcg. per week. No real side...

dogsandhorses

•3 days ago

14 Replies

ET / Osteonecrosis / Surgery

Hello Has anyone else with ET experienced problems with insufficient blood circulation causing osteonecrosis? If surgery is inevitable, what extra cautionary...

Hello Has anyone else with ET experienced problems with insufficient blood circ...

Bodensee

•3 days ago

5 Replies

inconclusive results for PV

𝗜𝗻𝗰𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲 𝗳𝗶𝗻𝗱𝗶𝗻𝗴𝘀 The bone marrow biopsy results indicate an expanded erythropoiesis and relatively reduced myelopoiesis. There are no...

𝗜𝗻𝗰𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲 𝗳𝗶𝗻𝗱𝗶𝗻𝗴𝘀 The bone marrow biopsy results indica...

Lababba

•4 days ago

3 Replies

below range RBC

I’ve read tha beliwvrange RBC can cau muscle pain and spasm. Mine are always low and I hit lots of muscle pain and get soasms in my trapezes. “Larger muscles...

I’ve read tha beliwvrange RBC can cau muscle pain and spasm. Mine are always lo...

130396

•4 days ago

12 Replies

Essential thrombocythemia with non-canonical MPL mutations (e.g., MPL R102P or R102C or R102L, etc.)

Hi! I wanted to see if there are other people out there who have been diagnosed with essential thrombocythemia with non-canonical MPL mutation. Mine is MPL...

Hi! I wanted to see if there are other people out there who have been diagnosed ...

TTA_

•4 days ago

9 Replies

Running with PV?

Hello. Have any of you with PV had medical advice re. which types of cardio exercise are good or to avoid? I wondered if modest levels of running have any...

Hello. Have any of you with PV had medical advice re. which types of cardio exer...

RoundTheWorld

•5 days ago

19 Replies

Jak2 question and PV question (have medical anxiety so nervous)

Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so...

Hey everyone sorry for such a long message. I'm a 28M and have had consistent hi...

HockeyFan47

•6 days ago

22 Replies

How the Hydroxy treatment goes in time?

I am 65 female with JAK2 and ET diagnosis from Feb 2024In the past four months my platelets were in 800 to 900 range, and besides my age I have no other...

I am 65 female with JAK2 and ET diagnosis from Feb 2024In the past four months m...

BrightNorka

•6 days ago

14 Replies

Rheumatoid arthritis

I have swellings in fingers and toes and told it was arthritis. I'm now taking hydroxy carbamide and have swellings on my knees and inside of my elbows. Also...

I have swellings in fingers and toes and told it was arthritis. I'm now taking h...

mag123ben

•6 days ago

5 Replies

What to expect at start of Pegasys?

Hello. A question for those of you with PV on Pegasys Interferon please:- If you had side-effects were they from the first injection or did they emerge later?...

Hello. A question for those of you with PV on Pegasys Interferon please:- If yo...

RoundTheWorld

•6 days ago

10 Replies

Pegasys nhs

Has anyone had a problem getting prescribed Pegasys on nhs as a first line treatment at 45? Really keen on this as a starting treatment due to age.

Has anyone had a problem getting prescribed Pegasys on nhs as a first line treat...

Scaredalone

•6 days ago

15 Replies

issues with Peg

Hi all I’ve had a few issues with Peg. Breathing changes & now sore throat which feels like a lump & uncomfortable ( hard to explain) Anyone experienced...

Hi all I’ve had a few issues with Peg. Breathing changes & now sore throat whic...

Mich10

•6 days ago

16 Replies

Anyone else with Jak2 PV have difficulty walking and leg pain?

I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after...

I'm new here and really happy I found this forum. I've been diagonsed with Jak2 ...

Panda2014

•7 days ago

25 Replies

Strokes, ET, treatment options

Dear All, I’m a 37-year-old male. Two and a half years ago, I suffered a stroke. At that time, in the emergency room, my platelet counts were 844, 698, and...

Dear All, I’m a 37-year-old male. Two and a half years ago, I suffered a stroke...

sandor13

•7 days ago

18 Replies

Covid spring booster

Wanted to thank all of you who replied to my earlier post about the covid spring booster,much appreciated and after a lot of thought about pros and cons , I...

Wanted to thank all of you who replied to my earlier post about the covid spring...

caroline_284

•7 days ago

4 Replies

ET JAK2+ - Could this be progressing and how do I obtain more information/support?

I've have had several consultants (it seems that heamatology has been a revolving door one in one out for years at my hospital) since my diagnosis and I feel...

I've have had several consultants (it seems that heamatology has been a revolvin...

Semhuk

•8 days ago

13 Replies

ET & Canine kennel cough

I have been diagnosed with ET on Feb 24 and currently on I Peg 45mcg. Our dog who was due his kennel cough (infectious tracheobronchitis) inoculation today...

I have been diagnosed with ET on Feb 24 and currently on I Peg 45mcg. Our dog w...

RedCardRob

•8 days ago

12 Replies

Hydroxyurea and Low White Blood Cell Count

I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been keeping my blood counts stable for a while. Since December 2023, my white blood...

I am taking 1,000 mg of Hydroxyurea daily for Polycythemia Vera. It has been kee...

Sheena2020

•8 days ago

5 Replies

Hip pain Bone Bx on 3/25/24

Good morning! I feel as though I'm falling apart and I'm almost 56. I'm having severe Left hip pain that started last night (out of the blue). Kept me up a...

Good morning! I feel as though I'm falling apart and I'm almost 56. I'm having...

MPNJunebug

•8 days ago

2 Replies

Test results..

My mum had her blood tests and for the first time since she was diagnosed with ET her platelets are within normal range. She is taking Hydroxyurea.. The only...

My mum had her blood tests and for the first time since she was diagnosed with ...

PH256

•8 days ago

3 Replies

Diet Advice for ET please

I was diagnosed three years ago with ET and started on hydroxycarbamide. The doctor told me very abruptly that I had a blood cancer and would have to take...

I was diagnosed three years ago with ET and started on hydroxycarbamide. The do...

Jelbea

•8 days ago

49 Replies

Time of taking Hydroxyurea

Hi Can you please tell me what time do you take Hydroxyurea? One haematologist yesterday told me I should take it in the morning empty stomach for it to work...

Hi Can you please tell me what time do you take Hydroxyurea? One haematologist y...

Kelly2

•8 days ago

18 Replies

Rux Questions

Hi, just looking for some advice and thoughts from those of you with knowledge or experience with Rux for PV. I have been on it now for approx 8 weeks. It...

Hi, just looking for some advice and thoughts from those of you with knowledge o...

MWxxxx

•8 days ago

41 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2024

Weight loss in PV?

Today's update

Momelotinib

possibly nail melanoma and UTI infections.

Leg pain

Sorry it has been a while with an update on Ruxolitinib

Ruxolitinib - declining efficacy?

Possible side effect?

ET / Osteonecrosis / Surgery

inconclusive results for PV

below range RBC

Essential thrombocythemia with non-canonical MPL mutations (e.g., MPL R102P or R102C or R102L, etc.)

Running with PV?

Jak2 question and PV question (have medical anxiety so nervous)

How the Hydroxy treatment goes in time?

Rheumatoid arthritis

What to expect at start of Pegasys?

Pegasys nhs

issues with Peg

Anyone else with Jak2 PV have difficulty walking and leg pain?

Strokes, ET, treatment options

Covid spring booster

ET JAK2+ - Could this be progressing and how do I obtain more information/support?

ET & Canine kennel cough

Hydroxyurea and Low White Blood Cell Count

Hip pain Bone Bx on 3/25/24

Test results..

Diet Advice for ET please

Time of taking Hydroxyurea

Rux Questions

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive