Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for February 2020

Does interferon slow progression of et?

I have heard a few people say interferon slows down progression of et? Does anyone know is this true? My haemo is leaving me on no meds only aspirin which am...

I have heard a few people say interferon slows down progression of et? Does anyo...

Irishgal12

•5 years ago

63 Replies

Update

Just a quick update as I have not posted on here in a while. I have tried various treatments - Ruxolitinib, HU and a combination of both but nothing really...

Just a quick update as I have not posted on here in a while. I have tried variou...

Graham7694

•5 years ago

8 Replies

Hydroxyurea 1000MG: Each dosage effectivness

I have been put on Hydroxyurea 500 MG Cap to lower my Platelet count, after 3 weeks my Dr. has upgraded me to 1000MG for one week before my next blood draw....

I have been put on Hydroxyurea 500 MG Cap to lower my Platelet count, after 3 w...

Hidden

•5 years ago

8 Replies

Want to take advantage of all our features? Just log in!

Pegasys and sore eyes

I have ET and I inject pegasys 90 fortnightly. The dosage has now been increased to 135. Following this larger dose I experience very sore eyes. This is most...

I have ET and I inject pegasys 90 fortnightly. The dosage has now been increase...

Tintins

•5 years ago

5 Replies

Symptoms with platelet count ~500?

Hi, everyone....I'm new here and this is my first post. My platelets have climbed from 450 in September to 540 recently. I hadn't had a CBC done for a couple...

Hi, everyone....I'm new here and this is my first post. My platelets have climb...

blue_reader

•5 years ago

36 Replies

ET and Echinacea

Was at my herbalist today and he mentioned Echinacea would help and for me to take drops in water. Does anyone else take this, apparently it helps white blood...

Was at my herbalist today and he mentioned Echinacea would help and for me to ta...

Mardihel

•5 years ago

10 Replies

Is this feeling normal??

Hello all.... I haven’t posted in a while but I would really appreciate some advice/experiences please. I was diagnosed ET JAK2 + last April.... my...

Hello all.... I haven’t posted in a while but I would really appreciate some ad...

Dazakella2010

•5 years ago

16 Replies

ET cancer or not?

Hi all, I posted a question several weeks ago , ET cancer or not, I received lots of replies and from the advice I received decided to email the geneticist...

Hi all, I posted a question several weeks ago , ET cancer or not, I received lot...

Hydrox

•5 years ago

6 Replies

Ulcers and Gastric Intestinal Metaplasia

I was recently diagnosed with ulcers and yesterday gastric intestinal metaplasia to add to the ET diagnosis from about a morn ago. This site has been...

I was recently diagnosed with ulcers and yesterday gastric intestinal metaplasia...

Zanzibi

•5 years ago

18 Replies

Blurred vision with PMF AND Jakavi

I developed PMF and was prescribed Jakavi a year ago. Eight months later I had blurred vision which continues today. Have other people experienced this...

I developed PMF and was prescribed Jakavi a year ago. Eight months later I had b...

Patchworklife

•5 years ago

10 Replies

I had 1.5 mil platelets and now they are 645K

I am new here. Great board, great posts, great people.13 Years ago (2003) my platelets progressed to 1.5 mil in about a year. Dr. suspected ET but couldn't...

I am new here. Great board, great posts, great people.13 Years ago (2003) my pla...

stai

•5 years ago

9 Replies

Extreme fatigue

New to this, but have been dx with PV for about 3 yrs now. I take HU and low dose aspirin. My labs have been great amd stable. Uet I'm still suffering from a...

New to this, but have been dx with PV for about 3 yrs now. I take HU and low dos...

406_living

•5 years ago

27 Replies

Vitamin D and MPN

I have recently read an article that it is important to take Vitamin D to boost the immune system. My wife was diagnosed with E.T. over five years ago and...

I have recently read an article that it is important to take Vitamin D to boost ...

Folly41

•5 years ago

15 Replies

Sudden High Blood Pressure

Dear Friends, I have ET. Since last summer, I have had 5 attacks of sudden high blood pressure on separate occasions including terrible headache that suddenly...

Dear Friends, I have ET. Since last summer, I have had 5 attacks of sudden high ...

Anag

•5 years ago

17 Replies

review of MF at hospital

I had an appointment on Monday with Donal Mclornan, one of Prof. Harrisons team at Guys. He said my blood counts were ok and that the Ruxolinitib is doing it's...

I had an appointment on Monday with Donal Mclornan, one of Prof. Harrisons team ...

billybrock

•5 years ago

8 Replies

PFO anyone?

My apologies sincerely for monopolizing this forum. Curious if anyone here perhaps had a TIA and/or was diagnosed with a PFO (hole in the heart - 25%ish of...

My apologies sincerely for monopolizing this forum. Curious if anyone here perha...

JT_Marlin

•5 years ago

5 Replies

Thank you MPN Voice! Where are you from?

I’ve been on this forum for two days and it’s trult remarkable how amazing it is to be able to share and connect with others going through something similar....

I’ve been on this forum for two days and it’s trult remarkable how amazing it is...

JT_Marlin

•5 years ago

99 Replies

Childhood immunisations

I was on my GP’s new website today and, among other things, it allowed me to see all my childhood immunisations. Now, when I was 13 I moved to Canada with my...

I was on my GP’s new website today and, among other things, it allowed me to see...

jillydabrat

•5 years ago

7 Replies

Pegasys and Alcohol?

Ive read from many of you the importance of consuming a lot of water while on pegasys. Curious for those of you who enjoy(ed) wine or other alcohol how that...

Ive read from many of you the importance of consuming a lot of water while on pe...

JT_Marlin

•5 years ago

12 Replies

Thank you all

Thank you all for your replies. My Hemoglobin is down to 13.9. Usually run close to 15 then phlebotomy. Dr. says this is too low for me and causing wicked...

Thank you all for your replies. My Hemoglobin is down to 13.9. Usually run close...

Kinsalelady

•5 years ago

2 Replies

Weird brain feelings

I read all Your posts but rarely write. Diagnosed with PV 8 years ago. Only on 81 mg Aspirin. The last week has been horrible with severe fatigue. Can barely...

I read all Your posts but rarely write. Diagnosed with PV 8 years ago. Only on 8...

Kinsalelady

•5 years ago

6 Replies

PV and dreadful itching

Hi everyone, I am 4 weeks into having interferon injections, I had my last one last week, I had a blood test yesterday and see the haematologist tomorrow, and...

Hi everyone, I am 4 weeks into having interferon injections, I had my last one l...

Yvette49

•5 years ago

37 Replies

How bad are our immune systems?

Hi all, I keep reading that Coronavirus affects people with compromised immune systems and thinking “umm ... that’s me!” Has anyone spoken to doctors about...

Hi all, I keep reading that Coronavirus affects people with compromised immune...

Timjonze

•5 years ago

11 Replies

Is anyone else like WTF?

I’m very recently diagnosed ET with JAK2 mutation having been tested since I had a TIA (side note, had an MI 4yrs ago which may or may not be related). On a...

I’m very recently diagnosed ET with JAK2 mutation having been tested since I had...

JT_Marlin

•5 years ago

67 Replies

Blood Smear

I want to know more about Blood smear, are they keep varying in MPN patients? Sometimes Normal, sometimes not? How important is to know about it together with...

I want to know more about Blood smear, are they keep varying in MPN patients? So...

neela2020

•5 years ago

3 Replies

The Effects of long-term hydroxyurea

I was diagnosed in 2009 with Jack ET. My numbers were too high to start with just aspirin so I’ve been on hydroxyurea. At first I was on hydroxyurea for just a...

I was diagnosed in 2009 with Jack ET. My numbers were too high to start with jus...

Marisolsc

•5 years ago

20 Replies

Mild small vessel disease and ET

I recently had an MRI and it was reported I have small vessel disease and after today’s Haematology appointment they are considering starting me on...

I recently had an MRI and it was reported I have small vessel disease and after ...

Jonnymitts

•5 years ago

17 Replies

Feeling better now

Hi I thought I’d give you an update on where I’d got to. I was diagnosed with ET last August and had been getting quite a lot of pain in my joints and back....

Hi I thought I’d give you an update on where I’d got to. I was diagnosed with ...

Wakeboarder

•5 years ago

5 Replies

NEW DRUGS FOR MPNS...

Post by MPN-MATE Admin » Sun Feb 09, 2020 12:45 am Morning all... :D Here in Sydney after our hellish bush fire season... we are now in Flood!...

Post by MPN-MATE Admin » Sun Feb 09, 2020 12:45 am Morning all... :D Here in...

socrates_8

•5 years ago

35 Replies

Cholesterol Change

As I understand it; my ET CALR won’t kill me. It does put me a greater risk for heart attacks and strokes along with every other cardio vascular issue. I was...

As I understand it; my ET CALR won’t kill me. It does put me a greater risk for ...

MJL1977

•5 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2020

Does interferon slow progression of et?

Update

Hydroxyurea 1000MG: Each dosage effectivness

Pegasys and sore eyes

Symptoms with platelet count ~500?

ET and Echinacea

Is this feeling normal??

ET cancer or not?

Ulcers and Gastric Intestinal Metaplasia

Blurred vision with PMF AND Jakavi

I had 1.5 mil platelets and now they are 645K

Extreme fatigue

Vitamin D and MPN

Sudden High Blood Pressure

review of MF at hospital

PFO anyone?

Thank you MPN Voice! Where are you from?

Childhood immunisations

Pegasys and Alcohol?

Thank you all

Weird brain feelings

PV and dreadful itching

How bad are our immune systems?

Is anyone else like WTF?

Blood Smear

The Effects of long-term hydroxyurea

Mild small vessel disease and ET

Feeling better now

NEW DRUGS FOR MPNS...

Cholesterol Change

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive