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MPN Voice

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Appt at Guys and St Thomas

Hello, I had my first appt at Guys yesterday and it was incredible from the minute we walked into the clinic. Everyone working there was so very kind, nothing...

Hello, I had my first appt at Guys yesterday and it was incredible from the minu...

RubyTea

•16 hours ago

8 Replies

Help!

Hello everyone. I'm 46 with ET been on peg for 15 weeks now (90 mg weekly) numbers show very small decline. Is that usual? Also I've started itching- insanely...

Hello everyone. I'm 46 with ET been on peg for 15 weeks now (90 mg weekly) numbe...

Otis23

•17 hours ago

5 Replies

Teeth

Good morning, I have been diagnosed with chronic myeloproliferative disease a year ago. It was discovered after a general medical check-up (raised platelette...

Good morning, I have been diagnosed with chronic myeloproliferative disease a ye...

RietFontein

•19 hours ago

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PEG shortage USA-UK contact

Not sure if this has been posted. There is a phone number for questions on this: "Please direct any clinical product questions to pharma& by phone at (888)...

Not sure if this has been posted. There is a phone number for questions on this...

EPguy

•1 day ago

3 Replies

Pain relief?

I'm 74 with ET JAK 2 , I also have Arthritis in my hips. My Physiotherapist advised using a Pain relieving gel - but I said they contain Ibuprofen and I'm not...

I'm 74 with ET JAK 2 , I also have Arthritis in my hips. My Physiotherapist advi...

Plavers

•1 day ago

12 Replies

Changes to medication

Hi all as ye all know pegasys interferon is going off the market I am on 90mg every two weeks which I am tolerating ok even though its slow to bring...

Hi all as ye all know pegasys interferon is going off the market I am on 90mg e...

VTAR24

•1 day ago

6 Replies

Myelofibrosis and osteopenia/osteoporosis

Before my sct I had significant fibrosis of my bone marrow. I have recently had a bone density scan which is in the osteopenia levels but I am 71. I don't...

Before my sct I had significant fibrosis of my bone marrow. I have recently had...

Scaredy_cat

•1 day ago

4 Replies

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

•2 days ago

6 Replies

About Marriage

Can mpn patient get marriage?

3708

•2 days ago

8 Replies

inflammation and ET HU

How do we treat inflammation ! ?

130396

•2 days ago

18 Replies

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

•3 days ago

20 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

•3 days 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

•4 days ago

18 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

•4 days ago

12 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

•5 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

•5 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

•5 days ago

24 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

•5 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

•5 days ago

11 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

•5 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

•5 days ago

20 Replies

Happy birthday

Happy birthday!! Enjoy each moment!

Teachme85

•6 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

•6 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

•6 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

•7 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

•7 days ago

21 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

•7 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

•7 days ago

5 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

•7 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

•8 days ago

9 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

Appt at Guys and St Thomas

Help!

Teeth

PEG shortage USA-UK contact

Pain relief?

Changes to medication

Myelofibrosis and osteopenia/osteoporosis

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

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