Posts - MPN Voice | HealthUnlocked

MPN Voice

10,759 members • 14,920 posts

All posts for September 2024

Waiting for results

I found out at the end of June that my platelets have been high for 3 1/2 years (490 at the last test). Urgent referral at beginning of July, delay because I...

I found out at the end of June that my platelets have been high for 3 1/2 years ...

mazeoffire

•3 hours ago

1 Reply

About Marriage

Can mpn patient get marriage?

3708

•9 hours ago

5 Replies

inflammation and ET HU

How do we treat inflammation ! ?

130396

•10 hours ago

3 Replies

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Results are in!

Latest Guys visit last week was given all my results and it's definitely ET! no marsking going on just the seroneg arthritis rearing it's head.Allele burden...

Latest Guys visit last week was given all my results and it's definitely ET! no...

Spanelmad

•15 hours ago

7 Replies

Tear Drop Shaped Red Cells

Anyone else have tear drop shaped red cells? Went to a new MPN specialist last week. She did a blood smear which I hadn’t had in years. Apparently I have a...

Anyone else have tear drop shaped red cells? Went to a new MPN specialist las...

George1976

•1 day ago

20 Replies

Jakafi Dosing

I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem...

I just had to change from Pegasys due to too many side effects, and was put on J...

dogsandhorses

•2 days ago

16 Replies

3 week review/update

I’ve been on Momelotinib for 3 weeks now and have been for a review My haemoglobin has gone from 76 to 81, not a massive rise However my platelets have...

I’ve been on Momelotinib for 3 weeks now and have been for a review My haemogl...

lizzziep

•2 days ago

11 Replies

Anyone else had platelets reduce?

Hi, my platelets have been reducing during the last 12 months and wondered if anyone else has experienced anything similar? I had a slight reduction a couple...

Hi, my platelets have been reducing during the last 12 months and wondered if a...

Itchy-Scratchy

•3 days ago

8 Replies

Frozen shoulder and now upper arm and shoulder pain with light tinnitus.

Good morning,If someone can shed some light please. I was diagnosed a year ago with prefibriotic myelofibrosis. Was prescribed Hydrea 1000mg daily for 5 days...

Good morning,If someone can shed some light please. I was diagnosed a year ago w...

RietFontein

•3 days ago

8 Replies

Hydroxycarbomide

I am on HU for ET , have increased dose recently by one 500 so am on 8 a week. I have always taken it at night on advice received when starting it some 4 years...

I am on HU for ET , have increased dose recently by one 500 so am on 8 a week. I...

jodary

•3 days ago

22 Replies

Mortgage advice

Hi guys, I was just wondering if anyone had had an issue with mortgage applications because of their MPN? How do you get life insurance to cover your...

Hi guys, I was just wondering if anyone had had an issue with mortgage applic...

DarcyShepp

•3 days ago

6 Replies

Essential Thrombocythemia

I was diagnosed with essential thrombocythemia 25yr ago. I was put on interferon which worked with no side effects. My oncologist then put me on Hydrea and...

I was diagnosed with essential thrombocythemia 25yr ago. I was put on interferon...

GRATHNOR

•3 days ago

6 Replies

High Blood Pressure meds with ET+Jak2

I’ve had ET+Jak2 for 9 years and have tolerated Hydroxy plus asprin quite well. I’ve always had low blood pressure but was diagnosed with high blood pressure...

I’ve had ET+Jak2 for 9 years and have tolerated Hydroxy plus asprin quite well....

Linda1950

•3 days ago

15 Replies

NOT HAPPY

My hematologist decided he would see his patients every 3rd visit. So since I only go twice a year, that means I won’t see him but every other year. This...

My hematologist decided he would see his patients every 3rd visit. So since I ...

Smoothie2020

•3 days ago

17 Replies

Happy birthday

Happy birthday!! Enjoy each moment!

Teachme85

•4 days ago

3 Replies

Hydroxycarbamide & eye problems

Has anyone here had problems arise with their vision after taking HU for a long time.?? I’ve got field vision loss …, been in HU over 10 years. My neuro...

Has anyone here had problems arise with their vision after taking HU for a long ...

130396

•4 days ago

11 Replies

Shortage of interferon

Hi on interferon since March this year seem to be tolerating it ok now ther is a shortage of it and pharmacist has trouble getting in I am really worried about...

Hi on interferon since March this year seem to be tolerating it ok now ther is a...

VTAR24

•4 days ago

3 Replies

Frustrating Appointment

Good Morning All I hope you don't mind if I vent here as I know others have experienced the same sort of thing but I just had a very frustrating appointment...

Good Morning All I hope you don't mind if I vent here as I know others have e...

Skyehope

•5 days ago

30 Replies

Bone Marrow Biopsy Didn't Happen

As it says in the title. I followed all the instructions, came off my warfarin and did the heparin injections, got to the hospital and no one had read my...

As it says in the title. I followed all the instructions, came off my warfarin a...

nellietheelephamt

•5 days ago

16 Replies

Switching from Pegasys to Besremi

Many of us are likely to be moving over to Besremi within the next month or so. Are there many here who have already done this and can they please share their...

Many of us are likely to be moving over to Besremi within the next month or so. ...

Paul123456

•5 days ago

5 Replies

Correlation between VAF and BMB findings?

I'm wondering if anyone has come across a report showing a direct correlation between VAF and amount of scarring determined via BMB. For instance if VAF is 20%...

I'm wondering if anyone has come across a report showing a direct correlation be...

LIGEBA

•6 days ago

2 Replies

Pen injector for Besremi in the US

Today I saw news on PharmaEssentia's website stating that they have applied in the United States to launch a pen Injector for Besremi. I think this is a good...

Today I saw news on PharmaEssentia's website stating that they have applied in t...

Joey1025

•6 days ago

11 Replies

back pain

Hi. Over the last few weeks I have developed a very uncomfortable lower backache. I had to increase my Hydroxycarbomide slightly in June from 11 to 12 tablets...

Hi. Over the last few weeks I have developed a very uncomfortable lower backache...

Ellipops

•6 days ago

9 Replies

Prosterate cancer

My father age 77 diagnosed with Prosterate cancer in year 2019. Under Zoladex 10.8 for the last 4 years. His PSA is always in 0.01 since we started this...

My father age 77 diagnosed with Prosterate cancer in year 2019. Under Zoladex 10...

Gurudut

•6 days ago

4 Replies

Update 8.3

I sent this note to my MPN Specialist and local hematologist. My most recent CBC at the PCP 09/06/24 shows HCT=46.2 HGB=14.7. The CBC at my local...

I sent this note to my MPN Specialist and local hematologist. My most recent ...

hunter5582

•6 days ago

22 Replies

Peg shortage and delayed dose

Hi Like many, I’ve had problems getting my usual weekly 90mcg dose but after a period of nearly 3 weeks, I took another dose at the weekend and I went into...

Hi Like many, I’ve had problems getting my usual weekly 90mcg dose but after a ...

PT99

•6 days ago

3 Replies

Query

Thank you so much to everyone who replied to my query of last week, I'm not sure how to reply individually but I very much appreciate your support. Phyllis x

Thank you so much to everyone who replied to my query of last week, I'm not sure...

Simris

•7 days ago

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Recent research re. relevance of VAF

MPN Hub summary Impact of mutated JAK2 allele burden on the outcomes in PV and ET of a recent article by Guglielmelli et al. durable molecular...

MPN Hub summary Impact of mutated JAK2 allele burden on the outcomes in PV and E...

hunter5582

•7 days ago

8 Replies

Recent research re. relevance of VAF

MPN Hub summary Impact of mutated JAK2 allele burden on the outcomes in PV and ET of a recent article by Guglielmelli et al. durable molecular...

MPN Hub summary Impact of mutated JAK2 allele burden on the outcomes in PV and E...

hunter5582

•7 days ago

1 Reply

Shortage of Peginterferon alfa2a

Just to let you know that the County Durham and Darlington NHS Trust has no stocks of the above and they are only receiving 3 Syringes per month at the moment....

Just to let you know that the County Durham and Darlington NHS Trust has no stoc...

Fairbank

•8 days ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2024

Waiting for results

About Marriage

inflammation and ET HU

Results are in!

Tear Drop Shaped Red Cells

Jakafi Dosing

3 week review/update

Anyone else had platelets reduce?

Frozen shoulder and now upper arm and shoulder pain with light tinnitus.

Hydroxycarbomide

Mortgage advice

Essential Thrombocythemia

High Blood Pressure meds with ET+Jak2

NOT HAPPY

Happy birthday

Hydroxycarbamide & eye problems

Shortage of interferon

Frustrating Appointment

Bone Marrow Biopsy Didn't Happen

Switching from Pegasys to Besremi

Correlation between VAF and BMB findings?

Pen injector for Besremi in the US

back pain

Prosterate cancer

Update 8.3

Peg shortage and delayed dose

Query

Recent research re. relevance of VAF

Recent research re. relevance of VAF

Shortage of Peginterferon alfa2a

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