MPN Voice | HealthUnlocked

maybe some of you have noticed I’ve been absent from this site of late well after a long illness my husband passed away on the 19th March. It was an illness...

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...

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...

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...

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 everyone, I haven't been on here for a while as some life events took over for the last couple of years. I am looking for some advice and feedback about my...

Hi all, It will be my first summer on HU and I am a little concerned about how to protect my skin, now that it needs extra protection because of HU, and how to...

Just wondering if it’s best to cut them from the diet or does it really matter? Do they make any difference to people with MPN’s. We are overseas and I am...

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...

Good morning to you all. I wonder if anyone can help with my query. I saw professor Harrison two weeks ago and among things discussed was joint and bone...

I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually...

I’m Canadian and after reading posting on this site I’ve noticed the percentage of Alle Burden is often referred to, so I asked my haematologist what mine was...

These days my lower legs ache all the time. They ache regardless of whether im active or inactive. Do you think this ET/MPN related or something else...

My numbers have been low and getting lower I think that test last year was below 2%. This year they have done another test and the JAK2 mutation result has...

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 have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have...

My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg twice daily. He has severe anxiety and is on SSRI (duloxetine) with recent...

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...

was diagnosed with ET and Jak2 in October 2023. I have been on Hydroxycarbamide, 500 mg per day and 75 mg aspirin since then with platelets decreasing to 310...

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...

I'm told to go for a walk every day. I take the dogs. Usually 1/2 HR to an hour. My head hurts , my neck hurts, my vision is crap anyway. And my left shoulder...

Good evening everyone. I’m enquiring if anyone has been contacted with an invitation to have a Spring Covid vaccination booster and if so, how many are or have...

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 all, not posted for a while but I am now at day+33 and finally starting to feel a bit normal again. I had very bad mucositis following sct and then problems...

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...

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, 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 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...

I acted like an adult today and had my MRI! Stable old lesions with no change. On my last MRI before Besremi I had a new one and it has shown improvement!!!!...

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...