Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,125 posts

All posts for April 2024

Newly diagnosed with PV and nervous about starting Hydrea

I would love to hear feedback about starting Hydrea. I am anxious because i love to be in the outdoors. I have already had a lot of sun exposure in my life and...

I would love to hear feedback about starting Hydrea. I am anxious because i love...

FiestyJuan

•7 months ago

17 Replies

AAMDS patient &family conferences

For those in the USA please see the link for some patient and family free conferences: AAMDSIF hosts Patient and Family Conferences around the United States...

For those in the USA please see the link for some patient and family free confer...

Bainbridge

•7 months ago

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Meylofibrosis/Hydrea

Hi everyone - new on this forum! Diagnosed with Meylofibrosis Sept 23. On Hydrea and blood counts within normal limits within weeks. Now on 1000mg per day...

Hi everyone - new on this forum! Diagnosed with Meylofibrosis Sept 23. On Hydrea...

RietFontein

•7 months ago

7 Replies

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Body twitches

My husband (73) was diagnosed with PV with Jak2 6mths ago,after annual blood test (had them last 20yrs after heart attack) showed High Haemaglobin. Referred to...

My husband (73) was diagnosed with PV with Jak2 6mths ago,after annual blood tes...

Luvlyhubby

•7 months ago

10 Replies

pulmonary hypertention

recently diagnosed with pulmonary hypertension with blood clots in my lungs i have had 2 right heart catheters and it is improving with some meditation of...

recently diagnosed with pulmonary hypertension with blood clots in my lungs i h...

AllEars

•7 months ago

4 Replies

Anagrelide success 😃

hi everyone, just wanted to share some positive news this weekend 😃, I have ET with MPL mutation. After persisting with weekly peg interferon alpha injections...

hi everyone, just wanted to share some positive news this weekend 😃, I have ET ...

Maxamber

•7 months ago

13 Replies

Hydroxycarbamide Dose

I am just wondering if anyone else has experienced Hydroxy not working as well after a time? I have been only taking it for 2 years now and all seems to have...

I am just wondering if anyone else has experienced Hydroxy not working as well a...

Yoganana1

•7 months ago

42 Replies

Advice re. Churchill hospital

Can anyone who attends the Churchill hospital in Oxford give me a little guidance please. I have been referred to haematology there and have an appointment in...

Can anyone who attends the Churchill hospital in Oxford give me a little guidanc...

friendofpiglet

•7 months ago

4 Replies

pulmonary hypertention

has any one out here had Balloon Angioplasty? And did it help?

AllEars

•7 months ago

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Persistant cough

hi everyone I haven’t posted for a while it was about my persistant cough. I now have had this cough for over a year now it has gradually got worse over the...

hi everyone I haven’t posted for a while it was about my persistant cough. I now...

Mudmaker

•7 months ago

2 Replies

Holiday

Been on holiday to Summerset, stayed longer than expected, brother has big C cancer. So needed extra tablets. Chemist rang my surgery, he came back saying I...

Been on holiday to Summerset, stayed longer than expected, brother has big C can...

mag123ben

•7 months ago

5 Replies

Heart problems

Has anybody else experienced heart problems with an MPN?I have been having heart palpitations and more severe breathlessness than usual for about 6 months. An...

Has anybody else experienced heart problems with an MPN?I have been having heart...

JP1952

•7 months ago

27 Replies

low serum iron. Normal ferritin

been getting very tired lately. ET (MPL) on pegysus 45ug every 2 weeks. Mentioned fatigue to haematologist and he suggested reducing peg further to 3 weekly....

been getting very tired lately. ET (MPL) on pegysus 45ug every 2 weeks. Mentione...

Sprat19

•7 months ago

4 Replies

Different doctor …..

I had my monthly haematology appointment yesterday. My usual doctor was on holiday so I saw one of the others on team. He went through the blood results,...

I had my monthly haematology appointment yesterday. My usual doctor was on holid...

lizzziep

•7 months ago

9 Replies

JAK2 mutation = MPN????

I am totally confused by an article I read in the MPN Research Foundation’s Spring newsletter & was hoping someone could clarify. The article stated: “It is...

I am totally confused by an article I read in the MPN Research Foundation’s Spri...

ERei

•7 months ago

6 Replies

Itching!

If anyone can please help? I've had aquagenic pruritis badly in the past but the wonder drug ruxulitinib stopped it completely. Such a relief. That was 5 yrs...

If anyone can please help? I've had aquagenic pruritis badly in the past but the...

soomoo

•7 months ago

17 Replies

Momelotinib for Myelofibrosis

Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively...

Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitin...

Cazbolac

•7 months ago

8 Replies

itching

Hi community, I have terrible itching and now being on Besremi I feel it has gotten a little worse. I plan to stay on Besremi unless it makes sense to switch...

Hi community, I have terrible itching and now being on Besremi I feel it has g...

Pogm

•7 months ago

16 Replies

Venesection issues, looking for some advice, please.

I have a venesection next Tuesday, my 4th since a diagnosis of Molecular Negative PV in August 2023. 1 and 2 were fine, nurses were surprised at how quickly...

I have a venesection next Tuesday, my 4th since a diagnosis of Molecular Negativ...

BlackOrangeCat

•7 months ago

17 Replies

a difficult journey!!

I was first diagnosed May 2019…My first and I think the last post was when starting Pegasys when my platelets had reached 1100. Started on 45mg and soon...

I was first diagnosed May 2019…My first and I think the last post was when star...

AllEars

•7 months ago

8 Replies

Travelling with interferon/pegasys

Hi , I have just recently started on the pegasys weekly injections . I am travelling to Greece and wonder if anyone can recomend the best way to keep the...

Hi , I have just recently started on the pegasys weekly injections . I am travel...

Sunnyhunny

•7 months ago

8 Replies

How did you decide on your treatment?

When I was first diagnosed with PV (age 59) my dr. had me do one phlebotomy (RBC 5.55, HCT 46.6, WBC 12, PLT 632 & ANC 9). He also discussed that guidelines...

When I was first diagnosed with PV (age 59) my dr. had me do one phlebotomy (RBC...

LIGEBA

•7 months ago

30 Replies

Does anyone deal with chronic headaches with ET JAK2?

I was diagnosed in June 2022 with ET JAK2. I have taken 500 mg Hydroxyurea starting daily, then every other day, 3x a week, and 4x a week. I had breaks...

I was diagnosed in June 2022 with ET JAK2. I have taken 500 mg Hydroxyurea s...

Mirror368

•7 months ago

2 Replies

Hyperthyroidism and Pegasys

Hi everyone, I have been on Pegasys for my ET for about 5 months and have now found out I have very low TSG levels and too high t4, i.e. hyperthyroidism. Has...

Hi everyone, I have been on Pegasys for my ET for about 5 months and have now f...

ts75

•7 months ago

7 Replies

E.T. JAK2

Good Morning, I have been diagnosed with E.T. Jak 2 positive. A question please? I thought that Jak2 was either positive or negative but have seen it...

Good Morning, I have been diagnosed with E.T. Jak 2 positive. A question pleas...

Rebus12

•7 months ago

2 Replies

Interferon and the liver

question to all my MPN people on here who are taking pegasys or besremi, how do you manage elevated liver enzymes? Do they cycle up and down? Is there anything...

question to all my MPN people on here who are taking pegasys or besremi, how do ...

dbus1417

•7 months ago

12 Replies

PV fatigue

My first time posting. I’m seeking advice, tips and help understanding my symptoms. I have PV +Jak2. I have just started Pegasys interferon after failed...

My first time posting. I’m seeking advice, tips and help understanding my sympt...

CherokeeBlue

•7 months ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2024

Newly diagnosed with PV and nervous about starting Hydrea

AAMDS patient &family conferences

Meylofibrosis/Hydrea

Body twitches

pulmonary hypertention

Anagrelide success 😃

Hydroxycarbamide Dose

Advice re. Churchill hospital

pulmonary hypertention

Persistant cough

Holiday

Heart problems

low serum iron. Normal ferritin

Different doctor …..

JAK2 mutation = MPN????

Itching!

Momelotinib for Myelofibrosis

itching

Venesection issues, looking for some advice, please.

a difficult journey!!

Travelling with interferon/pegasys

How did you decide on your treatment?

Does anyone deal with chronic headaches with ET JAK2?

Hyperthyroidism and Pegasys

E.T. JAK2

Interferon and the liver

PV fatigue

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