Today I received the news I was expecting. My PV has progressed to MF. Although the signs have been building up in my blood results for some time, I am nevertheless devastated to have it confirmed. 3 weeks ago my hb was 99 today it was 92 My consultant told me it wouldn't hurt to continue with the iron tablets she prescribed although she doesn't think they will have much effect. I go back in a month, by which time she will be able to tell me if I need weekly injections to increase the red cells. Any information from others in the same situation would be greatly appreciated.
Carol
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MCW22
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Hello dear. Although I don't have any advice I just want to say I am sorry about your progression to MF. I know you've been concerned about it for some time but having it confirmed must be incredibly difficult. My thoughts remain with you. ❤️
I also had to receive the news I’ve gone from ET to MF now dependent Transfusions , all has been good over the last two years my this continue ,who knows when there will be a change . I hope your new Journey will be good to you .
Sorry to hear this. My ET transformed to MF in 2019. Just make sure that you’re seeing MPN specialist who knows about the new medications that have come out in the last four years and what they treat best.
Well, the most recent one is momalatinib (Ojjaara). There’s also pacritinib, Fedratinib and Inrebic. Jakafi has been around for a while which I take now. You can also have EPO injections which I do, as well. Other people may require transfusions if their hemoglobin goes too low.
I've been on jakafi a few years. Weekly injections were mentioned in order to stave off transfusions till later. I will find out when I go back in a month. I will make a list of those drugs, do some research on them and ask about them at the next appointment. Thank you.
I’ve had MF diagnosed 7 years ago, and I take ruxolitinib 15 mg twice a day: I was very fatigued and anaemic and needed transfusions. I’ve recently started weekly EPO (erythropoietin) injections , which are keeping my haemoglobin counts normal without needing blood transfusions, and I feel much more energetic. I hope thus helps you.
Sorry to hear about the progression to MF. The progress being made in MPN testament is very hopeful. Perhaps one of the existing or emerging treatments will be the right approach for you. Wishing you success in managing the condition.
Hello .. I am not sure about ET and how it transforms to other blood disorders .. I ET with the calr .. I thought that was it .. do they all eventually transform . Thanks Trudy
Thank you fur the reply .. presently I feel great .. much better after the diagnosis and starting medication .. settled most of my symptoms .. fatigue brain fog weight loss … just wondering what symptoms changed did you prior to the new diagnosis ? 🙏
I didn’t really have any symptoms apart from anaemia and could feel my spleen. Certainly no weight loss (I wish) I felt great when I started on peg, then my haemoglobin dropped drastically, that was just after my covid jab!! was taken off peg, now on Rux and EPO injections. Ok on that so far.
In Denmark, (see below) interferon has been offered to newly diagnosed PV patients since about 2010 to prevent alot of cases of progression to MF. The Brits have stubbornly refused to follow their lead.
I had ET for around 12 years, diagnosed MF earlier this year. My haemoglobin dropped dramatically but after 3 transfusions and twice weekly EPO injections it is slowly climbing back towards normal levels.
So sorry to read this. I’m new to all this, but it seems there are some different drugs to research. I wish all the very best on your journey and good luck at your next appointment. I’m Carol too. 🤞🤞
sorry to hear about your progression to MF. It seems there are quite a few of us. I too have had a progression from PV, it must be 3 years ago now. My haemoglobin is going down. Thank you all for sharing info. It is helpful.
My husband had PV in 2018 he had this for 10 years the hydroxy was absolutely draining him after two years being on it . He was iron deficient and was at rock bottom.
He managed the first 3 years just having a pint of blood taken off every month.
He had a bone marrow biopsy November 2018 his results should primary MF . So now he's post PV Primary MF.
He then went to see the stem cell transplant team who said he was nowhere near needing a transplant. They ran all the test he's got 10 unrelated 10/10 donors on the register which is reassuring.
My husband was put on ruxolitnib it's really changed his quality of life .
He's been on this since Feb 2019 all his bloods are in normal range now .
He works full time he's now 51 years old .
He takes a baby aspirin, lanzopersole and 20mg morning and at night of ruxolitnib.
He does get generally tied at night but in all he has a demanding job.
We were worried sick when he progressed but In All we have now accepted this and he remains fit and well.
He has three monthly blood checks and 6mthly reviews now so this is all positive .
I've been on ruxolitinib a few years. My consultant said that due to my age (71) and poor past medical history a stem cell transplant would be too much for me and I agree.
So sorry to hear about the progression. I think that is one of the things all of us are fearful of, so we all feel for you. It is lovely to have this forum to support us with words of encouragement as well as sharing experiences regarding treatment, etc. I hope your symptoms remain mild for a very, very long time!
I got this diagnosis (PV to MF) exactly 1 year ago to the day - I am 53. I am not being treated currently as my only symptom is an enlarged spleen that doesn't cause any issues for me at this time. My only advice is to get an MPN specialist and that this site is superb for support. Reading through all these responses is eye opening in terms of how well people are surviving with treatments. Knowing that there are other treatments on the way is also comforting. Best of luck to you!!
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