Posts - MPN Voice | HealthUnlocked

MPN Voice

10,440 members • 14,389 posts

All posts for June 2019

Another day in paradise

Been in hospital for 3 days. Had my 3 month check up with consultant 3 weeks ago hadn't felt well temperature spiking, flu like symptoms. Was given antibiotics...

Been in hospital for 3 days. Had my 3 month check up with consultant 3 weeks ago...

linphy

•5 years ago

10 Replies

Blood test frequency

I was diagnosed with ET (CALR) three and a half years ago and my haem put me on HU to bring my platelet count down. At the end of last year after some...

I was diagnosed with ET (CALR) three and a half years ago and my haem put me on ...

Mickymitch

•5 years ago

19 Replies

Diagnosed ET - wondering about symptoms

Hi there. I've just joined the forum after being diagnosed with Essential Thrombocythemia in January following a cerebellar stroke in Oct. It's caused by the...

Hi there. I've just joined the forum after being diagnosed with Essential Thromb...

carlyjo

•5 years ago

6 Replies

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Bloated stomach with pv

Hi, Over the last few weeks I’ve noticed that my stomach has gotten bloated and hard to the touch. Is this another symptom of PV or should I go to my normal...

Hi, Over the last few weeks I’ve noticed that my stomach has gotten bloated and ...

Brian27

•5 years ago

7 Replies

EPO injections -safe storage

Does anyone have any tips on how keep the injections at fridge temperature when bringing them home from the pharmacy? The advice given by the pharmacy seems...

Does anyone have any tips on how keep the injections at fridge temperature when ...

Fika500

•5 years ago

14 Replies

Had f/u with Hematologist

I’m beyond frustrated. Basically was told to come back in a year. But to also go back to primary care doctor to further investigate the high platelets and high...

I’m beyond frustrated. Basically was told to come back in a year. But to also go...

Shellbi

•5 years ago

18 Replies

Update!

Nine months ago I wrote about my bowel cancer and the fact that my platelets had dropped to below 200. I’ve had the all clear on the bowel cancer subject to...

Nine months ago I wrote about my bowel cancer and the fact that my platelets had...

Juliet46

•5 years ago

6 Replies

Sweats

Hi not been on here for a while due to my mother being ill. I’m having really bad night sweats, and just wondered if anyone else suffered with them. I have ET...

Hi not been on here for a while due to my mother being ill. I’m having really ba...

Grumpyfairy

•5 years ago

13 Replies

HU and numbness

Hi , Random question but has anyone taking hydroxy experienced any numbness? Ended up in a and e due to some facial numbness . Have read (I know !) that this...

Hi , Random question but has anyone taking hydroxy experienced any numbness? E...

jodary

•5 years ago

23 Replies

Ibuprofen patches?

I am on aspirin and Anagrelide, does anyone know if it would be ok to use an ibuprofen/anti-inflammatory patch on my very painful arthritic knees? I'm going to...

I am on aspirin and Anagrelide, does anyone know if it would be ok to use an ibu...

lizzziep

•5 years ago

13 Replies

Prm-151 trial. Why so many patients you think discontinued therapy with prm-151 according to article?

Is this a bad sign for the future of this...

Aneliv9

•5 years ago

4 Replies

Pre Fibrotic Myelodibrosis

Just wondered if there was anyone else in this group who has been diagnosed with prefibrotic Myelofibrosis . It was only discovered in 2016 and when I found I...

Just wondered if there was anyone else in this group who has been diagnosed with...

kiwitraveller

•5 years ago

37 Replies

How long for hydroxyurea to lower platelets?

My mum has been diagnosed with ET and has been taking hydroxyurea since March, with her dose increasing to 1000mg/1500mg on various days of the week. She just...

My mum has been diagnosed with ET and has been taking hydroxyurea since March, w...

Pigeon18

•5 years ago

19 Replies

Platelets rise

I have ET Jak2 + diagnosed 2 yrs ago. I'm on hydroxycarbamide 5 days 500mg 2 days 1000mg. My platelets have been below 450000 for over a year. However my blood...

I have ET Jak2 + diagnosed 2 yrs ago. I'm on hydroxycarbamide 5 days 500mg 2 day...

Sam247

•5 years ago

3 Replies

Have ET but not the hallmark genes, Jak2, CalR, etc...

Would a genetic analyses be able to determine which gene/s of mine are mutated? For example my TPS9 is, or whatever a gene name would be.

Would a genetic analyses be able to determine which gene/s of mine are mutated? ...

Jschwab

•5 years ago

11 Replies

Miracle of Pegasys

Hi everyone I had my latest appointment today and I've been on Pegasys for about eight weeks gradually inceeasing to 90mg fortnightly and already my platelet...

Hi everyone I had my latest appointment today and I've been on Pegasys for about...

hall2

•5 years ago

13 Replies

Hydroxy

If your platelet level comes down to normal on aspirin do you have to go on hydroxy when you’re 60?

If your platelet level comes down to normal on aspirin do you have to go on hydr...

Andra13

•5 years ago

12 Replies

How to cope with palpitations from Anagrelide.

What is the best way of coping with palpitations caused by Anagrelide?

Mufftreacs

•5 years ago

17 Replies

I just want to say thank you to all of you. This support group has gotten me through.

The knowledge of this group as a whole, is so much more than I could have hoped for. It is clear how important it is to search out a good Hematologist, and...

The knowledge of this group as a whole, is so much more than I could have hoped ...

Jschwab

•5 years ago

12 Replies

PRV and ET?

Hello everyone, I'm wondering if anyone else has been diagnosed with PRV and ET? Most posts seem to refer to members having either PRV or ET. I have been told...

Hello everyone, I'm wondering if anyone else has been diagnosed with PRV and ET?...

Turfbeg

•5 years ago

12 Replies

ET and Pregnancy

Hi. I am 35 year old male diagnosed with ET in 2018. Its been 1.5 years I’m on Hydroxyurea. Does anybody has any idea on planning a baby while having this...

Hi. I am 35 year old male diagnosed with ET in 2018. Its been 1.5 years I’m on H...

MrThara

•5 years ago

17 Replies

Hypothyroidism and Hydro

Hi. My hypothyroidism is a mess right now 8,49 with 4,67 the upper normal. Just wondering if Hydroxyurea had anything to do with that? It has been many months...

Hi. My hypothyroidism is a mess right now 8,49 with 4,67 the upper normal. Just ...

Kelly2

•5 years ago

5 Replies

Inteferon and remission?

I know there’s been a lot of research on the peg interferon being successful with complete molecular remission. It has been very exciting to read about this....

I know there’s been a lot of research on the peg interferon being successful wi...

Miriammusic

•5 years ago

26 Replies

Metronizadole with PV

Hi. Just a quickie. Has anyone with PV ever been prescribed metronidazole the antibiotic please? I've heard it can affect RBC. Thanks.

Hi. Just a quickie. Has anyone with PV ever been prescribed metronidazole the an...

Skyehope

•5 years ago

10 Replies

Update

Hello everyone I hope you are all doing well, it’s been a while. My blood platelets have gone down (great news) other cells are up a little. It’s been 6...

Hello everyone I hope you are all doing well, it’s been a while. My blood platel...

wendycu

•5 years ago

7 Replies

Post hip operation swelling and sharp pains in hip and leg

Hi there. I had my left hip replaced 12 weeks ago. At six weeks despite lots of movement and exercise I had a tennis ball lump sitting under my scar, which...

Hi there. I had my left hip replaced 12 weeks ago. At six weeks despite lots of ...

gset

•5 years ago

5 Replies

Good : platelets 256 Bad: now anaemic

Specialist nurse called me this morning to tell me to reduce my Hydroxycarbamide Saturday and Sunday because my red cells are now too few and she wondered how...

Specialist nurse called me this morning to tell me to reduce my Hydroxycarbamide...

Mica11

•5 years ago

21 Replies

Anybody taking interferon for ET ?

I was diagnosed with ET at the age of 37.Until now I have been taking 75 mg of aspirin and been having regular check ups.Yesterday had appointment and now my...

I was diagnosed with ET at the age of 37.Until now I have been taking 75 mg of a...

Welbi

•5 years ago

17 Replies

Employment Problem ET

I have just been offered a new overseas job, I'm a Project Engineer, however one of the crirteria for failing the pre-employment medical, is 'known case of...

I have just been offered a new overseas job, I'm a Project Engineer, however one...

Flaxy

•5 years ago

5 Replies

3mth checkup

Hi everyone just wanted to share I bumped up my protein and added exercise and in 2 1/2 weeks lost 5 1/2lbs. Took charge and my 3 low numbers came up and the...

Hi everyone just wanted to share I bumped up my protein and added exercise and i...

rkhabtec

•5 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2019

Another day in paradise

Blood test frequency

Diagnosed ET - wondering about symptoms

Bloated stomach with pv

EPO injections -safe storage

Had f/u with Hematologist

Update!

Sweats

HU and numbness

Ibuprofen patches?

Prm-151 trial. Why so many patients you think discontinued therapy with prm-151 according to article?

Pre Fibrotic Myelodibrosis

How long for hydroxyurea to lower platelets?

Platelets rise

Have ET but not the hallmark genes, Jak2, CalR, etc...

Miracle of Pegasys

Hydroxy

How to cope with palpitations from Anagrelide.

I just want to say thank you to all of you. This support group has gotten me through.

PRV and ET?

ET and Pregnancy

Hypothyroidism and Hydro

Inteferon and remission?

Metronizadole with PV

Update

Post hip operation swelling and sharp pains in hip and leg

Good : platelets 256 Bad: now anaemic

Anybody taking interferon for ET ?

Employment Problem ET

3mth checkup

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