Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for January 2023

PV qualified or not?

What is the difference between an MPN Specialist and a Haematologist and how do I know the difference between the two, also does anyone have a rash with...

What is the difference between an MPN Specialist and a Haematologist and how do ...

bordeauxgirl

•2 years ago

26 Replies

hydrea shortage in Ireland

Hi - just wondering if any Irish patients are having problems sourcing hydrea at the moment. There seems to be a shortage of it.

Hi - just wondering if any Irish patients are having problems sourcing hydrea at...

Munster5

•2 years ago

24 Replies

Berocca Vitamin advice with PV Dx

Hiya everyone I hope you are all having a lovely weekend. Little query, just received a free pack of Berocca Vitamins which I used to take years ago....

Hiya everyone I hope you are all having a lovely weekend. Little query, just...

LittleLuna

•2 years ago

18 Replies

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ET Calr type 1 or 2 ?

How do you know if you are ET Calr type 1 or 2 and does it make any difference?I was just told i had the Calr mutation. Thanks in advance and have a good...

How do you know if you are ET Calr type 1 or 2 and does it make any difference?I...

Cat_lady52

•2 years ago

8 Replies

Real world experience with Besremi in ET and PV following exposure to Pegasys.

Abstract Despite widespread use of Pegylated forms of Inteferon in the management of Myeloproliferative Neoplasms (MPN), most clinicians have experience...

Abstract Despite widespread use of Pegylated forms of Inteferon in the managem...

Manouche

•2 years ago

2 Replies

Recombinant Interferon-β in the Treatment of Polycythemia Vera

Simple Summary: « The myeloproliferative neoplasms (MPNs) are chronic blood cancers characterized by elevated blood cell counts and, after decades, the...

Simple Summary: « The myeloproliferative neoplasms (MPNs) are chronic blood c...

Manouche

•2 years ago

10 Replies

Getting transfusion dependent

Hi. I have myelofibrosis which was diagnosed abt six years ago, and I’ve been on ruxolitinib 15 mg twice a day pretty much since diagnosis. I originally took...

Hi. I have myelofibrosis which was diagnosed abt six years ago, and I’ve been o...

Rachelthepotter

•2 years ago

14 Replies

Bone Marrow Biopsy

Yesterday I had my 2nd BMB ( 8 yrs between the first and second) Yes I was anxious , although not as anxious as the first. I just wanted to reassure those out...

Yesterday I had my 2nd BMB ( 8 yrs between the first and second) Yes I was anxio...

Lynne-G

•2 years ago

32 Replies

Shingles vaccine! Which one??

Hi, my wife has MF and a year ago suffered from Shingles, which still causes a little itching around the back of the head where the blisters were. She has been...

Hi, my wife has MF and a year ago suffered from Shingles, which still causes a l...

jointpain

•2 years ago

4 Replies

Low liver protein, lower and lower

All MPN patients, have you found that in your liver function checklist, there are several items about protein, total liver protein, prealbumin, etc. With the...

All MPN patients, have you found that in your liver function checklist, there ar...

merlisa

•2 years ago

4 Replies

If you have been diagnosed with PV, can I ask you...

Happy New Year Everybody! I have been diagnosed 5 1/2 years ago, and with 500g/daily hydroxy and one baby asperin ever since, there are ups and downs, but...

Happy New Year Everybody! I have been diagnosed 5 1/2 years ago, and with 500g/...

love0826

•2 years ago

9 Replies

Groin, back and thigh pain

I have avascular necrosis of both hips, I'm wondering if anyone with avn of the hips experiences this.

I have avascular necrosis of both hips, I'm wondering if anyone with avn of the ...

Hidden

•2 years ago

6 Replies

BMB done

Had a bmb this afternoon, a lot more painful than last time. They had a lot of trouble getting a sample, and had to have a two or three goes! Home now and...

Had a bmb this afternoon, a lot more painful than last time. They had a lot of t...

lizzziep

•2 years ago

25 Replies

2nd Dose of Besremi Today

Hi, 2 weeks ago, I had my first injection of 100 mg of Besremi. I had a CBC done and my numbers were 'normal' HCT 42.5 and platelets 380; best I had seen...

Hi, 2 weeks ago, I had my first injection of 100 mg of Besremi. I had a CBC ...

MrsBerri

•2 years ago

16 Replies

New data about Besremi

https://mops.twse.com.tw/nas/STR/644620230111E001.pdf to someone still worry about Besremi

https://mops.twse.com.tw/nas/STR/644620230111E001.pdf to someone still worry ab...

Wennn

•2 years ago

10 Replies

Hydroxyurea. And Red Blood Cells

Does Hydroxyurea lower red blood cells and how long does it take.

Rainyday22

•2 years ago

5 Replies

Monthly blog dedicated to young people living with MPNs - Alice’s fourteenth blog: Preparing for and Attending an MPN Consultation

Attending an MPN consultation can be daunting, whether it’s your first one, or even if you have had numerous clinic appointments, they can be loaded with...

Attending an MPN consultation can be daunting, whether it’s your first one, or e...

Mazcd

Partner•2 years ago

2 Replies

Bomedemstat trials in USA?

Does anyone know of trials with ET in the US. Especially Florida and East Coast. My husband has CALR ET with increasing Platelets. Failed HU. Is 85 and really...

Does anyone know of trials with ET in the US. Especially Florida and East Coast....

endlessfun

•2 years ago

6 Replies

Detox plan changed

I was thinking of doing detox for a month and stopping Hydroxycarbamide whilst doing. Then having blood test. Decided to go down to meds Monday and Friday for...

I was thinking of doing detox for a month and stopping Hydroxycarbamide whilst ...

Mostew

•2 years ago

18 Replies

Long term lansoprazole use

Hello community, I haven't been very active on here of late, life is so busy! My question is regarding lansoprazole. I was prescribed it when the aspirin and...

Hello community, I haven't been very active on here of late, life is so busy! My...

LRH77

•2 years ago

27 Replies

What does the fatigue feel like?

Hello All I have been overcome with the most extreme fatigue all of a sudden. I was at work interviewing and could feel my body almost collapsing under me as...

Hello All I have been overcome with the most extreme fatigue all of a sudden. ...

Fjdjdjdjd

•2 years ago

11 Replies

gum bleeds

I ate a banana this morning and had light gum bleed around tooth anyone else had this? It worries me as only diagnosed in august

I ate a banana this morning and had light gum bleed around tooth anyone else ha...

Cat1001954

•2 years ago

19 Replies

MPN-U or MPN Unclassifiable

Initial Dx was PV but failed to meet all criteria. I began seeing an MPN specialist and had Next Generation Sequencing done, and he reclassified me as MPN-U. I...

Initial Dx was PV but failed to meet all criteria. I began seeing an MPN special...

Jimbosan

•2 years ago

11 Replies

Hairloss

I read posts on this site everyday and it's been so good to hear other stories and advice. Thank you all. Does anyone else suffer from severe hair loss as a...

I read posts on this site everyday and it's been so good to hear other stories a...

Sivasi

•2 years ago

41 Replies

A New Cell Therapy Trial for MF

Not sure if this has come up before. This company is focused on improving SCT for bone cancers with a new agent, Orca-T....

Not sure if this has come up before. This company is focused on improving SCT f...

EPguy

•2 years ago

4 Replies

Allele Burden (this is a different question - I PROMISE!!!)

3 years ago my blood was tested for Jak2. The report said: "My JAK2 mutation comprises > 60% of total JAK2, suggestive of a...

3 years ago my blood was tested for Jak2. The report said: "My JAK2 mutation co...

ERei

•2 years ago

4 Replies

Still off Besremi

Had my liver sonogram, actually a full comprehensive abdominal sonogram last week. The findings were good. Everything measured fine and looked fine except...

Had my liver sonogram, actually a full comprehensive abdominal sonogram last wee...

Barbiebreath

•2 years ago

11 Replies

Insurance coverage - Besremi

Hi there - I am new to this forum, and find it super useful... For my colleagues in the US - my insurance denied my prescription (twice!) for Besremi (and so...

Hi there - I am new to this forum, and find it super useful... For my colleague...

PodKat

•2 years ago

2 Replies

Mouth ulcers and hydroxy

Happy New Year to you all! Since being on hydroxy, I’ve had ulcers in my mouth and with mouthwash prescribed by haematologist, they disappeared quickly. Last...

Happy New Year to you all! Since being on hydroxy, I’ve had ulcers in my mouth ...

Cokopops

•2 years ago

9 Replies

further infoi Re my sct

thank you all for the many messages of support and encouragement that you have sent

thank you all for the many messages of support and encouragement that you have ...

Scaredy_cat

•2 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2023

PV qualified or not?

hydrea shortage in Ireland

Berocca Vitamin advice with PV Dx

ET Calr type 1 or 2 ?

Real world experience with Besremi in ET and PV following exposure to Pegasys.

Recombinant Interferon-β in the Treatment of Polycythemia Vera

Getting transfusion dependent

Bone Marrow Biopsy

Shingles vaccine! Which one??

Low liver protein, lower and lower

If you have been diagnosed with PV, can I ask you...

Groin, back and thigh pain

BMB done

2nd Dose of Besremi Today

New data about Besremi

Hydroxyurea. And Red Blood Cells

Monthly blog dedicated to young people living with MPNs - Alice’s fourteenth blog: Preparing for and Attending an MPN Consultation

Bomedemstat trials in USA?

Detox plan changed

Long term lansoprazole use

What does the fatigue feel like?

gum bleeds

MPN-U or MPN Unclassifiable

Hairloss

A New Cell Therapy Trial for MF

Allele Burden (this is a different question - I PROMISE!!!)

Still off Besremi

Insurance coverage - Besremi

Mouth ulcers and hydroxy

further infoi Re my sct

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