Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2023

Itching & MPNs

From our friends at MyMPNTeam. A nice and quick piece on itching with MPNs. Yes, it occurs with all types of MPNs. Per Dr. Gabriela Hobbs. 65...

From our friends at MyMPNTeam. A nice and quick piece on itching with MPNs. ...

hunter5582

•1 year ago

6 Replies

Anagrelide SCP

I have been on Hydrea for 2 years and I have been feeling nauseous every day so I have started Ansgrelide SCP 0.5mg has anyone tried this this is my fist day...

I have been on Hydrea for 2 years and I have been feeling nauseous every day so ...

Windy51

•1 year ago

21 Replies

myelofibrosis

hello anyone with mf,I'm not sure if I should start treatment a lot of people on here are on treatment. my platelets are normal, hb slightly low ,slightly...

hello anyone with mf,I'm not sure if I should start treatment a lot of people on...

glyndale

•1 year ago

26 Replies

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Pegasys injection

Hi, i have a pegasys injection every week into lower tummy for two years, i alternate either side. Last week the injection site is quite red and sore, has...

Hi, i have a pegasys injection every week into lower tummy for two years, i alte...

Robeets_33

•1 year ago

15 Replies

just a little advice

hi lovely friends I started pegsy injections weekly at 135mg I feel so tired the same as just before I got diagnosed last year my legs are sore in my groin I...

hi lovely friends I started pegsy injections weekly at 135mg I feel so tired the...

Staroftheday

•1 year ago

16 Replies

Pegasys starting dose

Hi all! I got my prescription to start Pegasys due to my platelets being in the 1.5M range. I haven’t discussed the dose with my hematologist (not an MPN...

Hi all! I got my prescription to start Pegasys due to my platelets being in the ...

Aelle

•1 year ago

45 Replies

Peg vs Besremi side effects?

Anyone been in both peg and Besremi? If so what side effects were common and what were different? I have CALR Positive ET and was on weekly 45mcg peg for 4...

Anyone been in both peg and Besremi? If so what side effects were common and wha...

George1976

•1 year ago

5 Replies

pain in tummy

stomach ache for days on hydroxycarbamide 500mg a day any tips Iv tried everything

stomach ache for days on hydroxycarbamide 500mg a day any tips Iv tried everythi...

Cat1001954

•1 year ago

18 Replies

Besremi and Anxiety

I have been on Besremi for 8 months. Currently at 100 mcgs. The past 2 months I have experienced a lot of anxiety. Had anyone else experienced this? I was...

I have been on Besremi for 8 months. Currently at 100 mcgs. The past 2 months I...

JeanieRN

•1 year ago

11 Replies

CALR+ eosinophilia

Greetings from Brooklyn, New York! For the past 3+ years my CBCs have consistently shown significantly high eosinophils. In the first year, I received an...

Greetings from Brooklyn, New York! For the past 3+ years my CBCs have consisten...

yung_kokonut

•1 year ago

9 Replies

Vitamins

CAN PV patients on Hydroxycarbomide safely take vitamins/supplements?

Edinburgh1953

•1 year ago

3 Replies

feeling quite fed up, is it possible that interferon doesn’t work for me?

hello everyone, I hope your all keeping well. Just after a bit of advice as I’m feeling quite frustrated. apologies for the long post…… I have ET, been on HU...

hello everyone, I hope your all keeping well. Just after a bit of advice as I’m...

Nickyanne

•1 year ago

27 Replies

Muscle strain. Age or ET?

I'm recently diagnosed with ET (CALr, ~850 Platelet count) but from other blood tests in my medical record they suspect I've had from my early 30s. I'm not...

I'm recently diagnosed with ET (CALr, ~850 Platelet count) but from other blood ...

Jpn4

•1 year ago

7 Replies

how can I avoid/treat the side effects of hydroxyurea?

just started taking hu and after 5 days was in the ER with intractable vomiting and severe stomach pain. Are there specific foods or drinks to avoid when...

just started taking hu and after 5 days was in the ER with intractable vomiting ...

Hidden

•1 year ago

19 Replies

How often do I need blood checked on Hydroxycarbamide

Hi I’ve been on Hydroxycarbamide since April last year and after a lot of adjusting I’m on 3x 500mg Wednesday to Sunday and 2x 5mg on Mondays and Tuesday . As...

Hi I’ve been on Hydroxycarbamide since April last year and after a lot of adjust...

Kizzy03

•1 year ago

15 Replies

polycythaemia anaemia

has anyone with polycythaemia Vera had their severe anaemia treated

Luger1067

•1 year ago

9 Replies

Iron tests included in bloodwork?

Hello! Have been on hydroxy a year now and platelets are just beneath 400. I also have begun experiencing really nasty fatigue and wonder why ferritin the a...

Hello! Have been on hydroxy a year now and platelets are just beneath 400. I als...

livwellnuff

•1 year ago

8 Replies

swollen, red fingers

Why are my fingers swollen, red & tender? It used to be my toes had this condition... what next? Is this a sympton of ET? I have just had a 2nd BMB cos the...

Why are my fingers swollen, red & tender? It used to be my toes had this condi...

Eloise70

•1 year ago

7 Replies

Counts looking good after 2nd dose of Besremi

I had a CBC done the other day and everything is looking pretty good! My oncologist has cancelled the monthly phlebotomy and suggested I say at the same...

I had a CBC done the other day and everything is looking pretty good! My oncolo...

MrsBerri

•1 year ago

4 Replies

Hydroxy

Has anyone else been told they can't have any more hydroxy unless they have a blood test. This has just happened and at first I didn't question the whys and...

Has anyone else been told they can't have any more hydroxy unless they have a bl...

john0084

•1 year ago

15 Replies

New treatment

Hi ,started My new treatment yesterday 90mg pegasys interferon alpha injection in my stomach still take 1 aspirin aday,my platelets count just below 900 at...

Hi ,started My new treatment yesterday 90mg pegasys interferon alpha injection i...

Jody00

•1 year ago

27 Replies

granddaughters chicken pox

hi all, Question please… my granddaughter has just developed chicken pox, I have had shingles twice and the most recent was a few months ago which appeared to...

hi all, Question please… my granddaughter has just developed chicken pox, I hav...

Grendall

•1 year ago

10 Replies

Blood Morphology Evaluation

I’m ET Calr type 1 and just received my morphology evaluation yesterday. It now shows 3 new red blood cell findings: Anisocytosis (unequal sizes),...

I’m ET Calr type 1 and just received my morphology evaluation yesterday. It now ...

CalrType1

•1 year ago

5 Replies

Patient Empowerment & MPN Advances Presentations

From our friends at Patient Empowerment Network. How Do You Empower Patients? A very nice brief presentation by Dr. Claire Harrison about how to...

From our friends at Patient Empowerment Network. How Do You Empower Patients?...

hunter5582

•1 year ago

4 Replies

My latest thoughts on detox

I've decided, in part thanks to all the kind concern here, that I will wait to discuss idea of a short break from Hydroxycarbamide until I go to Guy's...

I've decided, in part thanks to all the kind concern here, that I will wait to ...

Mostew

•1 year ago

4 Replies

ET Hydroxy/short break - Update

I posted previously that I had temporarily suspended taking my Hydroxy with the agreement of my Haematologist. This was on 1st November 2022. On my telephone...

I posted previously that I had temporarily suspended taking my Hydroxy with the ...

azaelea

•1 year ago

22 Replies

video of the MPN Voice patients’ virtual forum, London, 12 Jan 23 – Menopause, HRT and MPNs - now available to view

This online forum focused on Menopause, HRT and MPNs, with guest speaker Debra Holloway, Nurse Consultant Gynaecology, Guy’s & St Thomas’ NHS Foundation Trust....

This online forum focused on Menopause, HRT and MPNs, with guest speaker Debra H...

Mazcd

Partner•1 year ago

2 Replies

iron infusion gone wrong

hi everyone I was diagnosed with ET but possibly PV still watching but iron was low they gave me a iron infusion then I had a anaphylactic reaction in October...

hi everyone I was diagnosed with ET but possibly PV still watching but iron was ...

Nc3500

•1 year ago

20 Replies

Nerves ‘nicked’ during bmb

I’ve spoken to haematology this morning as I’ve been having such a lot of pain since my bmb last week. I’ve only got to try to turn over in bed and it’s like...

I’ve spoken to haematology this morning as I’ve been having such a lot of pain s...

lizzziep

•1 year ago

25 Replies

Real-world treatments and thrombotic events in polycythemia vera patients in the USA

»The majority of patients in both risk groups (60% of high-risk and 83% of low-risk) initiated treatment with phlebotomy monotherapy, and during a median...

»The majority of patients in both risk groups (60% of high-risk and 83% of low-...

Manouche

•1 year ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2023

Itching & MPNs

Anagrelide SCP

myelofibrosis

Pegasys injection

just a little advice

Pegasys starting dose

Peg vs Besremi side effects?

pain in tummy

Besremi and Anxiety

CALR+ eosinophilia

Vitamins

feeling quite fed up, is it possible that interferon doesn’t work for me?

Muscle strain. Age or ET?

how can I avoid/treat the side effects of hydroxyurea?

How often do I need blood checked on Hydroxycarbamide

polycythaemia anaemia

Iron tests included in bloodwork?

swollen, red fingers

Counts looking good after 2nd dose of Besremi

Hydroxy

New treatment

granddaughters chicken pox

Blood Morphology Evaluation

Patient Empowerment & MPN Advances Presentations

My latest thoughts on detox

ET Hydroxy/short break - Update

video of the MPN Voice patients’ virtual forum, London, 12 Jan 23 – Menopause, HRT and MPNs - now available to view

iron infusion gone wrong

Nerves ‘nicked’ during bmb

Real-world treatments and thrombotic events in polycythemia vera patients in the USA

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