Experiences with

Mast cell leukaemia

I take ampyra to help me pick up my legs however I sometimes can’t wait to get to a shopping cart at the store. It makes me feel like I’m walking more normal

First - THANK YOU all for your input on this Fortunately my itching is not as bad as some of you reported. - PHEW! but nonetheless very aggravating..... I talked to my Haematologist and he declined to recommend an increase in my Fexofenadine dosage or an alternative and referred me back to my GP whose

Hello everyone, it's been a while since I last posted, today I received the saddest news ever, my hematologist told me probably progression to myelofibrosis, diagnosed with ET since 2014. I was just treated with HU once a day and blood counts stable, but lately I becoming anemic, RBC(3.94) Hemoglobin

Hi All, lost the plot again because of hospital stay and info coming at me from all sides. Is Jakafi actually a chemo treatment for my PV diagnosis? TIA for your insights. Hope you’re all doing well.

Saw my consultant on Wednesday. Told her I was having a liver biopsy the following day. She told me to stop the interferon I was on immediately! I am injected every Sunday with 90.mg. Later I wondered why ( when they referred me to the Liver specialist 5 months ago) they didn’t take me off it then?

anybody on here have low resting blood sugar level while taking Jakafi?never had this before only since I have been taking jakafi.......and the reason I know is I stopped for 3 weeks and sugar went back up and now that im back on sugar level is low.

hi it’s been a while since I posted. I left the site cause my CLL transformed into non Hodgkin’s lymphoma presenting as anaplastic stage four . It was a stressful time and after having palliative chemo which finished in august I presented with a complete response to the treatment obviously this is

Hi all, I’m now + 168days post SCT. Consultant clinic visit last Friday showed that white, red cell and Haemoglobin remain low & T-cell chimerism had fallen slightly from 65% to 52% so the plan is to contact the original donor to request further white cells for DLI’s to reduce the risk of disease

PV positive. Discovered in August 2020. I have been on Besremi since May 2023, but only on the full 500 mcg dose of Besremi since June 2024. My platelets responded very quickly from 1.1M to between 200 and 300k within 6 months of starting the Besremi. However, my HCT has been very stubborn. I have

Is there any connection between Jakafi and eodema of the ankles thighs and mostly abdomen? I understand there can be weight gain associated with Jakafi,but thought it was an increase in appetite and reduced spleen size that was responsible. Neither is applicable in my wife's case, just water retention

My husband has myelofibrosis after polycythemia. He has been taking ruxolitinib for 9 years. Over the past year, he has lost 23 kg, his already huge spleen continues to grow, he has anemia, shortness of breath. The doctor recommended switching to Momelotinib. Please write, does anyone have experience

I have been trying to decrease my Statin dose and my lipid panel was good except my HDL dropped to 31. I do not have any of the risk factors ( not overweight, don’t smoke ,eat well exercise etc) so I asked google “ Can CLL cause your HDL to droop and the answer was YES. Does anyone have any information

Hi and Happy Holidays, New Year, Christmas, Hanukkah, Kawanzaa (Did I miss anything?). My wife, the well-meaning Vegan in my life and healthy advocate of getting rid of diabetes in the world (a wonderful lofty goal even if she gets only a few converts amongst our family and friends), read about a

My 76 yr.old husband has been diagnosed with this and soon will have to start treatment with Hydroxyurea. He had no symptoms and the diagnosis was found after random blood tests. I am very concerned how this drug will affect him particularly where driving is concerned as we live an hrs drive from our

Good day! My husband has post-polycythemic myelofibrosis. Since 2015 he has been taking ruxolitinib. Over the past year he has lost 20 kg, he has anemia and thrombocytopenia. The doctor recommended switching to Momelotinib. Maybe someone has the same diagnosis and is taking Momelotinib?

With my now intense interest in the FDA approval process for untreatable conditions I was curious on that for Rux. It had an extraordinary fast approval. Its phase 1 trial started in 2007, just two years after the discovery of the Jak2 mutation. Best I can tell its R&D started 2006 and it was approved

I am taking hydroxyurea for my pv. From what I have read since I joined the group, there doesn't seem to be a way of confirming early the onset of myelofibrosis other than having regular bone marrow biopsies, which would be extremely expensive. For some people it seems the symptoms of myelofibrosis

I posted before on acquiring toxic levels of vit B6. https://healthunlocked.com/mpnvoice/posts/151206700/high-b6-level B6 is unique among the B's in its potential neuro hazard at high levels. It usually reverts upon quitting but not always and it can take months. Only certain pts are prone to

Thanks to everyone who responded to my previous post on Progression. Since then I have had my BMB and the worst has been confirmed. Not only have I progressed to Post PV-MF, 1+ to 2+ in some places, but I am in accelerated blast phase at 10%. I have had irradiated blood transfusion last week as my hbg

can jakafi cause lower sodium, chloride and sugar?anyone have this.?