Posts - MPN Voice | HealthUnlocked

MPN Voice

10,431 members • 14,373 posts

All posts for March 2019

Platelets 1200 - No Action to be taken?

ET Patient diagnosed 23 years ago, now age 46. Tried Hydroxy, Interferon, and other drugs, without long term success, due to side effects. Now in a situation...

ET Patient diagnosed 23 years ago, now age 46. Tried Hydroxy, Interferon, and ot...

Arb411

•5 years ago

17 Replies

Low platelets

Hi everyone, my platelets level was arround 140 for almost 5 years. Recently It is decreasing slowly to 110. I have no visible sign or symptoms. Can you please...

Hi everyone, my platelets level was arround 140 for almost 5 years. Recently It ...

Hidden

•5 years ago

3 Replies

Does stress have an impact on symptoms?

I’m not sure if I’m imagining it but has anyone else experienced severe fatigue shortly after feeling really stressed or after an argument? At the time I felt...

I’m not sure if I’m imagining it but has anyone else experienced severe fatigue ...

Louise2870

•5 years ago

15 Replies

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So scared and new to this board

I’m scared. Petechiae (tiny) all over stomach and legs. Slight elevated HCT (44.7) and RBC are high normal. Been referred to hematology and oncology for...

I’m scared. Petechiae (tiny) all over stomach and legs. Slight elevated HCT (44....

MochaMommy23

•5 years ago

24 Replies

Jakavi and anaemia

Two months ago I started taking Jakavi which wonderfully eliminated several symptoms but has caused anaemia leaving me tired and breathless. I get very cold...

Two months ago I started taking Jakavi which wonderfully eliminated several symp...

Patchworklife

•5 years ago

19 Replies

Fallen into a black hole?

Hi all I've been diagnosed with ET CALR-2. Had this for over 20 years and been on aspirin daily. I've been seeing haemostat privately as first I was covered by...

Hi all I've been diagnosed with ET CALR-2. Had this for over 20 years and been o...

hall2

•5 years ago

8 Replies

Going back on Hydroxy

Hi everyone, update on my last post when you lovely people gave me some constructive answers . As promised I'm reporting back after visit to Haematologist...

Hi everyone, update on my last post when you lovely people gave me some construc...

azaelea

•5 years ago

14 Replies

Osteoporosis

Hi everyone I am ET jak 2+ Advice and experience please Osteoporosis medications. Have been offered Teriparatide injections. Not sure what to do. Any...

Hi everyone I am ET jak 2+ Advice and experience please Osteoporosis medication...

Judypinner

•5 years ago

1 Reply

Best time of day to take hydroxy/allopurinol?

I’ve just started medication this week and not sure if I should be taking it all at the same time or different times of the day. I am taking 1 apixaban (blood...

I’ve just started medication this week and not sure if I should be taking it all...

Louise2870

•5 years ago

7 Replies

Just to say hi

I've never been on a forum. I'm a 54 year gardener . I was diagnosed with polycythaemia 14 years ago . Been on hydroxy carbamide since then .. generally all...

I've never been on a forum. I'm a 54 year gardener . I was diagnosed with polyc...

redvanman

•5 years ago

8 Replies

Heart

So who has heart flutters fast heart rate practicality doing nothing it wakes me up I had stress test I had angiogram last year every think ok I had a monitor...

So who has heart flutters fast heart rate practicality doing nothing it wakes me...

Hahag

•5 years ago

14 Replies

Polycythemia jak2 possitive and mouth ulcers :-(

Hi everyone, just found this site. I have been on hydroxycarbomide for about 2 years, and the last year I have been suffering with mouth ulcers, almost every...

Hi everyone, just found this site. I have been on hydroxycarbomide for about 2 y...

Yvette49

•5 years ago

19 Replies

PV jak2+ and new to all of this!

Hi sorry in advance for this post being a bit long winded! I’m a 48 year old newly married, mother of 4 working as an HLTA in a primary school. I have been...

Hi sorry in advance for this post being a bit long winded! I’m a 48 year old ne...

Louise2870

•5 years ago

39 Replies

Anagrelide and heart issues

Hi. Just wanted to give an update. Am being closely monitored by cardio now and have been put on diuretics and ace inhibitors, which has helped. Now waiting on...

Hi. Just wanted to give an update. Am being closely monitored by cardio now and ...

Hidden

•5 years ago

4 Replies

Is taking Hydroxy before bed good or bad?

I read here that some people take their hydroxy at night to lessen the side effects by sleeping through them and thought I'd try it. Can't really tell any...

I read here that some people take their hydroxy at night to lessen the side effe...

h2ogal

•5 years ago

10 Replies

Is PV a terminal illness?

I am reading about how people have successfully made critical illness claims for PV and I'm so pleased for them as it must make the financial side of things so...

I am reading about how people have successfully made critical illness claims for...

scousesbird

•5 years ago

6 Replies

Is anyone else on Pegasys at the level I have been prescribed.

Hi, I had been on Pegasys 90mcg from the start in June 2018 until December when my haematologist upped the dosage to 135 mcg. This is starting to cause me...

Hi, I had been on Pegasys 90mcg from the start in June 2018 until December when ...

JohnSC

•5 years ago

8 Replies

Pegasys-sounds the best so far?

Is Pegasys so far the best for ET and cure the disease as I read many post saying that for some people, the treatment can be stopped after plate counts going...

Is Pegasys so far the best for ET and cure the disease as I read many post sayin...

Monkey57

•5 years ago

13 Replies

Worried and need advice

Diagnosis: ET Age:41 Date: June 2018 Current platelet count: 1700, 000 Drug: Interferon ( Pegasys) started March 2019 My platelet count is currently...

Diagnosis: ET Age:41 Date: June 2018 Current platelet count: 1700, 000 Drug: Int...

Charlieapple2018

•5 years ago

35 Replies

A little piece of heaven in God's own county

Just thought I would share this view of Fountains Abbey, North Yorkshire, with you and hope it lifts your spirits as much as it did mine. Walking around the...

Just thought I would share this view of Fountains Abbey, North Yorkshire, with y...

Ovingite

•5 years ago

12 Replies

Current best available information about MPNs: Fast Facts MPNs by Reuben A Mesa and Claire N Harrison

Hi This is a photo of the cover of the brilliant Fast Facts summary paperback for MPNs. Maz trailed it earlier, and I got a copy from Amazon a few weeks ago....

Hi This is a photo of the cover of the brilliant Fast Facts summary paperback fo...

Rachelthepotter

•5 years ago

13 Replies

Travel insurance

Hi everyone, What a carry on getting travel insurance we were with stay sure with my blood clotting abnormality and my husband's PV. But my husband's PV is...

Hi everyone, What a carry on getting travel insurance we were with stay sure wi...

tracey13

•5 years ago

8 Replies

Oxford Forum 24 th April

Looking forward to being there, and I’ll aim to wear a badge with my Rachelthepotter name on it so that forum friends can find me. Someone ( sorry, can’t...

Looking forward to being there, and I’ll aim to wear a badge with my Rachelthepo...

Rachelthepotter

•5 years ago

6 Replies

Curcumin help please

Hello all, hope you're all doing as well as you can. I have a question about curcumin, not for myself, but for my husband who has terminal bowel cancer. He...

Hello all, hope you're all doing as well as you can. I have a question about cu...

lizk1993

•5 years ago

17 Replies

Good news!

The preliminary results from my 800 calorie per day diet are very promising. After 3.5 weeks my blood sugar and cholesterol have both come down significantly...

The preliminary results from my 800 calorie per day diet are very promising. Aft...

beetle

•5 years ago

11 Replies

Starting treatment

Hi, going through a rough patch. After 2 years of stressful events I have been suffering badly with anxiety to the point of feeling ill . Also hypothyroid my...

Hi, going through a rough patch. After 2 years of stressful events I have been ...

jodary

•5 years ago

23 Replies

Trying CBD for first time.

I have dealt with back pain muscles and joints for some time now, and am not a fan of big pharmaceutical and pills. I decided to finally give this...

I have dealt with back pain muscles and joints for some time now, and am not a f...

ElLumpo

•5 years ago

3 Replies

Anxiety and depression in MPN patients

I think you will find this an interesting read, as it validates the need for physicians to address mental health issues of MPN patients -...

I think you will find this an interesting read, as it validates the need for phy...

PVReporter

•5 years ago

8 Replies

MPN and Elimination Diet

I read this book called "The Six Secrets of Successful Weight Loss" by Dr John Mansfield. In it is an elimination diet which is designed to discover food...

I read this book called "The Six Secrets of Successful Weight Loss" by Dr John M...

Searcher56

•5 years ago

20 Replies

Oxford Forum: I won’t be doing the patient experience talk

Hi So it seems that I’m not going to be asked to gve the patient experience talk for the Oxford forum. Its a pity, I’d have liked to do it, but there it is....

Hi So it seems that I’m not going to be asked to gve the patient experience ta...

Rachelthepotter

•5 years ago

24 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2019

Platelets 1200 - No Action to be taken?

Low platelets

Does stress have an impact on symptoms?

So scared and new to this board

Jakavi and anaemia

Fallen into a black hole?

Going back on Hydroxy

Osteoporosis

Best time of day to take hydroxy/allopurinol?

Just to say hi

Heart

Polycythemia jak2 possitive and mouth ulcers :-(

PV jak2+ and new to all of this!

Anagrelide and heart issues

Is taking Hydroxy before bed good or bad?

Is PV a terminal illness?

Is anyone else on Pegasys at the level I have been prescribed.

Pegasys-sounds the best so far?

Worried and need advice

A little piece of heaven in God's own county

Current best available information about MPNs: Fast Facts MPNs by Reuben A Mesa and Claire N Harrison

Travel insurance

Oxford Forum 24 th April

Curcumin help please

Good news!

Starting treatment

Trying CBD for first time.

Anxiety and depression in MPN patients

MPN and Elimination Diet

Oxford Forum: I won’t be doing the patient experience talk

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