Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for April 2024

On another subject …

Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia?...

Inspired bya post on another site I’d like to ask if anyone has high risk mutati...

lizzziep

•8 months ago

5 Replies

Different mutation?

I was just checking via my NHS app what had been sent to my GP, when I noticed on a letter from Guys this - it listed my mutations - CGN - normal karotype,...

I was just checking via my NHS app what had been sent to my GP, when I noticed o...

lizzziep

•8 months ago

1 Reply

overwhelmed

My partner has had slowly rising haemoglobin for about 6 months but it stayed quite borderline. Since Christmas, the hct and rbc have also been elevated. The...

My partner has had slowly rising haemoglobin for about 6 months but it stayed qu...

Scaredalone

•8 months ago

18 Replies

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Question about Hives-bad hives

I have had terrible hives and angioedema for the past two days. I look like I've had lip injections. And my hands are both incredibly swollen. I'm itchy to...

I have had terrible hives and angioedema for the past two days. I look like I'v...

Lena70

•8 months ago

25 Replies

Airport travel with Injections

Can some experienced travellers who use Pegasys give me some advice please. I am travelling this week from the UK to Mexico, and have bought a Disoncare...

Can some experienced travellers who use Pegasys give me some advice please. I am...

swimswam

•8 months ago

16 Replies

Hydroxycarbamide

Hello I’m taking Hydroxycarbamide 500mg daily for the last 3 years for ET jak2 positive. Yesterday 4 of my fingernails came away from the skin bed…… so sore...

Hello I’m taking Hydroxycarbamide 500mg daily for the last 3 years for ET jak2...

YBSx

•8 months ago

17 Replies

ET and psoriasis treatments

I’m triple negative ET, age 55, low dose aspirin, stable platelets 700-800, diagnosed 2018. I have had guttate psoriasis for 30 years which has developed into...

I’m triple negative ET, age 55, low dose aspirin, stable platelets 700-800, diag...

jenster68

•8 months ago

13 Replies

Viramin B12 deficiency

I am Jak 2 ET and taking 1000mg hydroxycarbamide daily and 75mg aspirin. I saw my consultant today and he said my vitamin B12 levels were extremely low so I...

I am Jak 2 ET and taking 1000mg hydroxycarbamide daily and 75mg aspirin. I saw m...

Lilbert

•8 months ago

49 Replies

Update 8.1.5 - Month out from vensection

CBC results from today show a sustained response from the venesection I had done on March 26. HCT = 43.3% LYMPH=1.17 and NEUT=0.59 are still a bit low but...

CBC results from today show a sustained response from the venesection I had done...

hunter5582

•8 months ago

36 Replies

CALR Trial (INCA033989)

Is anyone currently participating in this trial? I'm a low risk ET+CALR patient and my MPN Specialist (Dr. Gotlib at Standford) just informed me that I could...

Is anyone currently participating in this trial? I'm a low risk ET+CALR patient ...

Zeppelin11

•8 months ago

20 Replies

Updated numbers on Besremi...interesting

I've been on Besremi now for about 11 months, although increased extremely slowly. Even more slowly than the 50 mcg biweekly increase. But I've been at 350 mcg...

I've been on Besremi now for about 11 months, although increased extremely slowl...

Luthorville

•8 months ago

11 Replies

bone pain

hi any advice on bone pain besides aspirin was taking 81 mg 3 times a day for erymtha but has a bleeding issue..so stopped aspirin for a while bone pain has...

hi any advice on bone pain besides aspirin was taking 81 mg 3 times a day for e...

Nc3500

•8 months ago

8 Replies

Effective Management of Polycythemia Vera With Ropeginterferon Alfa-2b Treatment

Discussion; The results in our study demonstrate that the new dosing regimen of 250-350-500 µg of ropeginterferon alfa-2b is well-tolerated and highly...

Discussion; The results in our study demonstrate that the new dosing regimen of...

Manouche

•8 months ago

9 Replies

9 months on interferon

Hello lovely MPN folk in my laptop! Yesterday I took my 40th injection of interferon and I had the results of my latest blood test today. Since starting,...

Hello lovely MPN folk in my laptop! Yesterday I took my 40th injection of in...

Skyehope

•8 months ago

7 Replies

Mithridate trial

Hi everyone I have PV and diagnosed in Dec 2022. I started peg interferon in feb 2023 and I have been on 135mg every week for about 4 months now . My recent...

Hi everyone I have PV and diagnosed in Dec 2022. I started peg interferon in ...

Blonde25

•8 months ago

6 Replies

At last I know.

Spoke to the doctor today and at last I know I have ET .I have fibromyalgia and the symptoms got my brain thinking it was MF. My white blood cells have been...

Spoke to the doctor today and at last I know I have ET .I have fibromyalgia and ...

mag123ben

•8 months ago

4 Replies

Change in bone marrow fibrosis during mome or Rux therapy do not corelate with efficacy outcome to patient with Mylofibrosis

Here a new research published by MPN team lead by Dr. Ruben Mesa https://onlinelibrary.wiley.com/doi/10.1002/jha2.854 Hope it will useful Cheers

Here a new research published by MPN team lead by Dr. Ruben Mesa https://online...

william-Indo

•8 months ago

2 Replies

Burning hands and feet

Hi all the saga continues another heam at my local hospital!Well here goes they had me on 45 mg of interferon 3 times a week everything fine until 3 weeks ago...

Hi all the saga continues another heam at my local hospital!Well here goes they ...

Spanelmad

•8 months ago

17 Replies

How frequently do you see your MPN specialist?

Hi all, I'm curious to hear how often you see your MPN specialist and get your platelet level checked. My specialist recently suggested we go from follow ups...

Hi all, I'm curious to hear how often you see your MPN specialist and get your p...

ETinNYC

•8 months ago

22 Replies

MF and natural epo levels.

Does anyone with MF get tested routinely for their natural epo levels? We have asked to have my wife's epo level checked at her next blood test opportunity,...

Does anyone with MF get tested routinely for their natural epo levels? We have a...

jointpain

•8 months ago

5 Replies

Unexplained infertility

Hi I do wonder how many cases of unexplained infertility are actually due to undiagnosed ET and the blood clots that can develop. Is there any research...

Hi I do wonder how many cases of unexplained infertility are actually due to u...

Gipsy123

•8 months ago

5 Replies

Depression and peg interferon

hi all, does anyone with a history of depression have experience of using peg interferon? I suffer from what you might call “mild” depression but it’s...

hi all, does anyone with a history of depression have experience of using peg ...

Timjonze

•8 months ago

19 Replies

Sharp rise in platelets

Hi everyone. I’m getting a bit anxious and would appreciate any advice please. Three weeks ago my platelets were 569 having come down gradually over the last...

Hi everyone. I’m getting a bit anxious and would appreciate any advice please. ...

EdwinaJ

•8 months ago

19 Replies

Possible ET? Higher levels of Platelets for years

Hello, I found this forum after googling why my platelets have been consistently higher than reference range for years. I am 28, and my platelets have...

Hello, I found this forum after googling why my platelets have been consistently...

Creativeyellow

•8 months ago

16 Replies

Interferon impact on fertility

Hi everyone, Its been awhile since I've been on here . I would welcome your advice pls. I was diagnosed with Triple Negative-Essential Thrombesemia last...

Hi everyone, Its been awhile since I've been on here . I would welcome your adv...

Biscuitlove

•8 months ago

17 Replies

Question-New

Hi! So glad for this group. Have suffered with migraine since I was 8yo and have been treated for hypertension for over 13 years and I'm now 55. I have...

Hi! So glad for this group. Have suffered with migraine since I was 8yo and ha...

MPNJunebug

•8 months ago

15 Replies

magnesium supplements

Hi all It’s been a while since I posted on here. But I have a question regarding sleep. I have ET, Jak2, had it 7 years, and at the moment take aspirin and...

Hi all It’s been a while since I posted on here. But I have a question regardin...

Grumpyfairy

•8 months ago

9 Replies

Question For Hunter

Hi, This is my first post. I had my second bone marrow biopsy today, hoping to get a specific diagnosis of which MPN I have. I saw a hematologist first, then...

Hi, This is my first post. I had my second bone marrow biopsy today, hoping to...

Bikelove

•9 months ago

4 Replies

pulmonary hypertention

developed pulmonary hypertension after having phlebotomys

AllEars

•9 months ago

7 Replies

Jakavi advice please

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is...

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow...

Sivasi

•9 months ago

38 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2024

On another subject …

Different mutation?

overwhelmed

Question about Hives-bad hives

Airport travel with Injections

Hydroxycarbamide

ET and psoriasis treatments

Viramin B12 deficiency

Update 8.1.5 - Month out from vensection

CALR Trial (INCA033989)

Updated numbers on Besremi...interesting

bone pain

Effective Management of Polycythemia Vera With Ropeginterferon Alfa-2b Treatment

9 months on interferon

Mithridate trial

At last I know.

Change in bone marrow fibrosis during mome or Rux therapy do not corelate with efficacy outcome to patient with Mylofibrosis

Burning hands and feet

How frequently do you see your MPN specialist?

MF and natural epo levels.

Unexplained infertility

Depression and peg interferon

Sharp rise in platelets

Possible ET? Higher levels of Platelets for years

Interferon impact on fertility

Question-New

magnesium supplements

Question For Hunter

pulmonary hypertention

Jakavi advice please

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