MPN Voice | HealthUnlocked

Hi all, I've beed recently diagnosed with Essential Thromcythemia and have been presented with two treatment options, I guess it will all be around side...

I have been on Pegasys for the two years since my diagnosis of PV at age 59, initially on a weekly dose of 45 mcg and for the last year on 67.5 a fortnight....

My platelets are now under 600, just! A big improvement from when they were over 1000 a few weeks ago. Local doctor wants me to carry on with Momelotinib and...

just had my blood test come back as jak 2 positive which i paid for private as my hb was 19.8 on latest ahn i think hct 0.58 but my gp wouildnt order the test...

Wondering if anyone else in Ireland is having the same issue. I had a BMB in the summer and only recently have I asked for a copy of the results, as in Ireland...

Haven't posted here for some time as everything seemed to be going reasonably well after my SCT back in February. Today I got a call to come into hospital as...

Hi all, I was diagnosed with ET JAK2 on Tuesday 22nd Oct and have spent the last two days reading everything I can on the subject. when I was told I was in...

Has anyone given up having the Covid boosters, due to side effects? I just had my 10th and was 50/50 about having it but decided I should. As per previous ones...

Hi Does anyone see an MPN specialist near to Nottingham,Leicester or Derby ? Not just a haematologist, if so would you mind messaging me . Thank you

I was diagnosed almost 2 years ago with ET with Jak2 Mutation. I am still on 500 mg Hydroxyurea, the minimal dose once a day! I saw an ENT yesterday. The...

Any suggestions how to explain to people how you are feeling? I've recently been told I "just need to get out for a walk and do a bit more every day" or to...

I am taking Hydroxy I suffer with arthritis do any of you taking this medication use ibuprofen is it okay

apologies, I have posted this under another thread but just felt I had to reach out for advice: I’ve been suffering from an iron deficiency anemia since...

Feeling a little overwhelmed just now, following my appointment with my haematologist yesterday. I have very recently been diagnosed with Myelofibrosis, post...

And breathe ……… I had blood taken yesterday and this morning I’ve had a message to say my platelets have dropped from over 1000 to 698, so very relieved at...

I just got a possible Dx of tooth resorption on a tooth. Simplified this is when the immune system dissolves tooth materials from inside or outside. Usually...

I emailed my blood test results to Guys earlier today and had a phone call about an hour later, the person I spoke to (Sue) asked a few questions to clarify...

Hi all Sorry I haven't been on here for a while and I hope you are all doing ok. A little while ago my condition was changed from Polycythemia to Idiopathic...

Just wondering if anyone still gets the free covid tests. I have asked various pharmacies including Boots. None of them stock free tests. Even asked at my...

Has anyone ever taken a break from hydroxy and if so were there any repercussions ? Platelets currently in 700s but were higher before, currently on 1 x500mg...

As you may recall, my daughter is also JAK2v617f positive, currently showing as ET. My son has idiopathic erythrocytosis, no known mutation. My next younger...

A big thank you to all MPN clinicians and MPN VOICE staff who organised an excellent patient day in London yesterday. Thank you for giving up your Saturday...

Hi. I'm considering moving to Scotland (from Norfolk) and wanted to see where the best MPN specialists are located. I remember seeing a document some time ago...

Hello, I am very grateful for this forum. By reading the many posts I have gained much better insight into the disease. I was diagnosed with PV 2 years ago. I...

I've had quite the journey since April with what I call Cluster Migraines. I'm 63, ET JaK2 V617F. Aspirin daily, 90mcg Pegysis Interferon every 8 weeks Had...

Hello, I am at the start of my journey having been diagnosed with ET, (CalcR), on 15th August this year. I commenced hydroxycarbamide 500mgs daily on 17th...

Hey all. I don't know if I'm asking a question or just venting so bare with me.Brief history- 31yr old female. Diagnosed Jak2+ ET start of this year but going...

« Patients with polycythemia vera (PV) achieved greater hematocrit control and improvement in symptoms with ruxolitinib compared with best available therapy...

Hello Has anyone been poorly after their flu jab ? o have had an upset stomach , been very tired and have had headaches for a week . wondering if that is...

Hi I have just seen a professor of Haemotology in Cambridge UK I asked for a referral from my GP as my B12 has be sky high at 2000 for 9 years and my...