Im new here.just one previous post.My bone marrow test results show after waiting 7 weks that i have primary myelofibrosis.I am upset that it is worse than I thought.I dont seem to be able to get any straight answers about life expectancy and really how I am going to be feeling and how soon.
I have no symptoms yet and have to go into a very busy hospital in a few days to be started on Peg interferon.Again I dont know what to expect apart from feeling
flu like symptoms.
would much appreciate any advice.
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caroline_284
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I’ve been on pegasys since December 2016. We are all different. To reassure you my hospital has separation between COVID patients and haemo outpatients. Also staff are being tested for COVID. All staff are being extra careful to prevent virus exposure to patients (this is not something new).
As for symptoms with pegasys (obviously follow your haemo’s advice). The lower the doseage the less symptom. I started with 45mcg increasing after 8 weeks to 90mcg. On 45mcg I had no symptoms. On 90mcg I felt exhausted immediately- slight flu like symptoms. I took this injection at night with paracetamol and slept all night. This was my most noticeable symptom, and only lasted the first night of every injection). My bloods are now normal and I’m back on 45mcg. Happy to chat if you would like more reassurance.
Thanks for asking Tina. slight sore throat, weak legs,shaking arms and fatigue (I suffered from fatigue anyway and would have expected this after all those stairs). Whatever it is it’s a weird one. Doesn’t feel major but monitoring carefully. Eleanor xx
My name is Steve, and I am based in Sydney, Australia...
I have Post ET / MF. CALR+ Type 2, w. ASXL1+ & Von Willebrands Syndrome (VWS) Type1 or2?, (you did not mention which Driver mutation it is that you have?). Possibly JAK2?
Usually, a doctor would discover a patient's' Driver mutation' first via a simple Full Blood Count (FBC), and then send the patient for a Bone Marrow Biopsy (BMB), and then based upon the patient's total symptom burden I.e. DIPPs or MIPPs score, and would then make their diagnosis etc...
Prognosis, can also vary quite widely too... Much depends upon many different variables, as you will come to learn over time... Be patient w/ yourself Caroline, you are in the right place to learn all there is about MPNs... And everyone here is so very helpful...
It is a tad tough to get one's head around everything there is to know about MPNs, and in that first instance, the whole thing can be a tad overwhelming too...
So, if the above statement somewhat resembles a little of how you might be feeling at the moment, suffice to say, that's a normal response, under the circumstance... There's so much to learn...
Curious, however, that you are being recommended for Pegasys' rather than Ruxolitinib?
Ruxlitinib, is what many of us w/ MF are taking as the primary medication in use for Myelofibrosis (MF) etc... However, there are others around the world who are also taking Pegasys too I believe...
Not sure who it is that you are seeing as your specialist, but my first question might be,
"...are they an MPN Specialist?"
If not, please gain a referral from your GP and seek a 2nd opinion, (from an MPN specialist), as doing so is as much a part of the process as that of being diagnosed, in my view... Others here might also agree... (?)
In my own case, I strived to learn and glean as much as I could about MPNs, so that I might be better informed to help direct the management of my own MPN condition, because ultimately the buck stops w/ me... Hence, I believe it is imperative to take an assertive stance for the sake of my own well-being...
In any event, welcome to our rather exclusive little club... In time you will also come to find that this club knows few boundaries, and there are many other global MPN Forums around the world, and we have one is Oz too...
Thank you very much for your reply.I have the JAK 2 mutation (i am a bit unfamiliar with all the terms at the moment. Presumably Im being started on the Peg interferon just to see how it goes to start with. Its just with having no symptoms at the moment I would rather not take anything|
I’ve been recently diagnosed with MPN ET about 2 weeks ago after a long process and have had 2 weeks for Peg interferon alpha. I have not had many side effects at all from the drug but it’s early days I guess. I am not sure if the side effects will get worse over time, as this is all very new to me. It does make me feel very tried for a couple of days, but I don’t tend to get flu like symptoms, I do have a red patch appear around my injection site but other than the tiredness which I hope does get better with time I feel I am get on well with the drug.
Everyone will react differently, I find the hardest part of the drug for me is injecting myself with it, my husband had to take over last time but it is something I am working on!
Hope it doesn’t give you to many of the horrible side effects
Thank you very much.I hope I dont have too much difficulty with the injection, but I dont think my husband would be too keen to do it| I will have to see how I go. I hope your treatment continues well.
So sorry to hear the news. I am PV JAK2+. I have been on Pegasys 45mcg for 10 weeks now and was suppose to go up every four weeks to the eventual 180mcg, but my platelets have been coming down nicely so they’ve kept me at 45. Very little in side effects as Eleanor noted. On occasion some mild light headedness and occasional mild fatigue. I have been alternating injections on the left and right side of my stomach which I dont mind - there is just a small bit of redness there. Hang in there. Lean heavily on this forum. It is an incredible resource knowing there are others like you out there not just for knowledge or feedback on your symptoms or treatment but just to help cope mentally too. Good luck and dont be a stranger.
My husband has the same diagnosis he is really well he's on ruxolitanib and works full time.
Don't even think about life expectancy as there's constantly new medication coming out all of the time. Some data is old that you read about on Google.
He does suffer with anxiety and depression a lot of this is with his job and working away.
His bloods are all in normal range now and he's quite healthy.
That's great you have no symptoms .
My husband suffered terrible exhaustion before he started ruxolitanib now he's doing really well .
Thank you very much for your reply and your comments on life expectancy.I shall have to be much more positive and not read all the poor outcomes. As you say they are researching all the time.
My husband has seen the bone marrow transplant team he's way to healthy for a transplant we pray that his medication will continue to work and that he will never need a transplant.
Medication has come a long way .
We had to stop googling for information as it was making us both ill.
Now he just gets on with life.
He had PV first he was diagnosed at the age of 40 he's 48 this year and is doing really well.
Just wish this pandemic wasn't about as everyone life is on hold .
Having things to look forward to keeps him going .
Hello Caroline ,Our son has PMF diagnosed thirteen years ago. He is only on asprin and luckily fit and well. He was diagnosed at 37 .When he was initially diagnosed t he Haematologist he was under was talking about a possible Bone Marrow Transplant within 18 months That was before he was transferred to the care of a wonderful MPN specialist.Now he has six monthly checkups , his consultant is happy with his bloods and to continue just as he is. Bye Gill
I’ve been on Peg Interferon since the start of the year. Started on 45 mcg and the dosage has then been doubled every 4 weeks until now, when I’m currently on 180 which I believe to be the maximum dosage.
Did have some side effects at the start but they have diminished over time and last couple of weeks have been OK. It is working - my Platelets at the start were 1100+ and last week down to 800. When under 750, the dosage will reduce.... its a little bit trial and error at the start.
Thank you for your reply.That sounds reassuring, I know it appears to work quite slowly but I have only just started and keeping my fingers crossed at the moment.I hope your treatment continues well.
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