Posts - MPN Voice | HealthUnlocked

MPN Voice

11,162 members•15,619 posts

All posts for March 2025

Cardiac testing advice

Hi everyone. I'm 76 years old and I have PV MPN-U and am doing well on 500 mg of hydroxyurea and 2 baby aspirin daily. Recently had some chest pain,( which...

Hi everyone. I'm 76 years old and I have PV MPN-U and am doing well on 500 mg ...

•5 hours ago

Dose reductions of momelitinib from 200mg a day , 200mg alternate days and now to 100mg per day

Hi I have primary myelofibrosis- diagnosed 7 yrs ago I’ve now switched to 100 mg of momelotinib per day to see if I can maintain the useful increase in...

Hi I have primary myelofibrosis- diagnosed 7 yrs ago I’ve now switched to 1...

•10 hours ago

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starting a low dose pegasys

i have et (+jak) and im starting a low dose pegasys. im asking for thoughts on side effects in terms of when they mostly hit? im wondering what day of the week...

i have et (+jak) and im starting a low dose pegasys. im asking for thoughts on s...

•1 day ago

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Update 8.8 - More opportunities to learn!

I just completed a round of consultations with my Integrative Medicine doc, gastroenterologist, and endocrinologist. The good news is that the one venesection...

I just completed a round of consultations with my Integrative Medicine doc, gast...

•2 days ago

Besremi increase in HCT

Hi I have PV my target is 0.43 as this is best for me, I changed to Besremi from Peg in DEC24 and over my last 2 visits Jan & Mar 25 since on Besremi some of...

Hi I have PV my target is 0.43 as this is best for me, I changed to Besremi from...

•3 days ago

Where to find patient information about MPNs, and in particular myelofibrosis.

https://www.macmillan.org.uk/cancer-information-and-support/blood-cancer/myelofibrosis-mf This is s helpful short guide put out by Macmillan. UK based- but...

https://www.macmillan.org.uk/cancer-information-and-support/blood-cancer/myelofi...

•3 days ago

Besremi Thoughts?

Hello all. I am a 59 year old woman, diagnosed with PV three years ago and recently diagnosed with low iron deficiency/ low iron saturation levels. Treatment...

Hello all. I am a 59 year old woman, diagnosed with PV three years ago and recen...

•3 days ago

NCA033989 Trial - 2nd Infusion Update

On Monday, I had my second infusion. My pre-lab results showed my platelets at 326,000 and my LDH was normal – numbers I haven't seen since before my ET...

On Monday, I had my second infusion. My pre-lab results showed my platelets at 3...

•3 days ago

HU not a fit for me

I am no longer on Hydroxurea was not the right fit for me. After consulting with MPN Specialist concerning side effects, he moved me to Jakafi and have had...

I am no longer on Hydroxurea was not the right fit for me. After consulting with...

•5 days ago

Haemocrit

Hi I was recently diagnosed with mpn awaiting bone marrow am in hospital at the moment as legs started shaking but they say not connected anyway I had bloods...

Hi I was recently diagnosed with mpn awaiting bone marrow am in hospital at the ...

superburning628

•5 days ago

Interferon

Hi has anyone been able to source interferon from any pharmacy in Ireland as I'm off now as in shortage again platelets 964 only on aisprin hospital are...

Hi has anyone been able to source interferon from any pharmacy in Ireland as I'm...

•6 days ago

Pain in knee

Hi I was wondering if any of you know if you have bad pain in you knee and all I am on at the moment is aspine until I have bone marrow but am in hospital at...

Hi I was wondering if any of you know if you have bad pain in you knee and all I...

superburning628

•6 days ago

Anyone taking Hydroxyurea have insomnia?

My husband who has pre-fibrotic MF takes hydroxyurea 500 mg Mon to Fri. He’s had pretty intense insomnia, so wondering if it could be from the hydroxyurea...

My husband who has pre-fibrotic MF takes hydroxyurea 500 mg Mon to Fri. He’s had...

•7 days ago

Started INCA033989 Trial at Stanford | 40 Years Old w/ ET-CALR1

Hello Friends, After careful consideration, I decided to join this trial. Since I was diagnosed in 2017 I have been on Hydrea, Interferon and Angerlide....

Hello Friends, After careful consideration, I decided to join this trial. Since...

•7 days ago

Has anyone else got depressed on momelotinib?

Hi. I have PMF, and rux was making me anemic and tired. Running a personal cold chain so that I could use EPO injections to boost Hb was beyond me. Using Rux...

Hi. I have PMF, and rux was making me anemic and tired. Running a personal cold ...

•8 days ago

Forgot to say ……

I forgot to update on here that the lesion I had removed from my arm last month was benign! The dermatologist thought it was a squamous cell but it just looked...

I forgot to update on here that the lesion I had removed from my arm last month ...

•8 days ago

Besremi Gas & Diarrhea

I did my first injection of 125mcg of Besremi on Sunday. I was on 135mcg of Peg Interferon. I wanted to try Bes during the shortage to see if it suited me...

I did my first injection of 125mcg of Besremi on Sunday. I was on 135mcg of Peg ...

•8 days ago

Hip Replacement

When I was 49 I had a hip replacement and a year later I felt off so the doctor ordered a blood test in which it came back my platelets being too high. (1000)...

When I was 49 I had a hip replacement and a year later I felt off so the doctor ...

•8 days ago