I'm posting because I've had a search and can't seem to find many people in a similar situation.
I'm only 24, reasonably fit, no other conditions and don't smoke. I used to be in the low risk group but apparently now with high Hcrit and platelets I've been bumped to high risk and they want to start me on HU or interferon Alpha?
also Jak2+ if that makes a difference
I was having venesections to control red blood cell count but it has been creeping up regardless and now they don't want to give me more because i'll be deficient in iron.
I'm not mad about starting chemo
Is this a common place to be in. Most other people seem to have high platelets or high red blood cell count. Is there and option just to continue with venesections and live with iron deficiency. Is HU preferred to Interferon in young people?
The weird part for me is that I'm symptomless and yet suddenly things seem to be serious...
UPDATE: Turns out my Haem asked a specialist (Claire Harrison) for an opinion and she has recommended no treatment until the symptoms of anaemia symptoms are unbareable
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MattLovesu
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Sorry to hear that - suggest you discuss all the treatment options and any alternative approaches with a haematologist who is an expert in MPN's. Look at pegylated interferon as an option if you do need to start medication - it's generally better tolerated than standard interferon and may be a better option when starting at your age. I've been on Pegasys for nearly a year now and find it effective and easy to use, with few side effects - platelets down from 1100 to 330.
I was in the same situation as you about a year into PV 11 years ago. The venesections had reduced the red blood cell count but platelets and white cells became too high from the the venesections. Interferon was the best option for me and it has worked. The dose has to be adjusted from time to time, I even stopped for 6 months. I have noticeable side effects on Pegasys at 180 a week. Now I am on 45 they are tolerable. I still get fatigued. As Andy says try to get Pegasys which is the long lasting version.
Answering your question why Interferon. I did a lot of research. This site hadn't started so I used the MPN-NET site in the US plus others. I did so much research to understand the implications of this disorder. Months of research and investigation. I began to work out that I needed a private consultation. This led to interferon. If you need more detailed info contact me on portermme@hotmail.com
Hi Matt, im not sure all Haematolgists would consider your platets to be too high, im definately no expert but I know some Haems are happy for platelets to continue until they get into the 1000s while others are not. Also im not sure what the 'normal' HCT range is for men but for women the upper limit is .45. I am 43 and 1 year into PV, it took a lot of v'sections to get my HCT within acceptable ranges and my iron reserves are depleted. I am anaemic but I am told that is where they want me to be. I dont take iron supplements. Anaemia being the lesser of two evils, and I seem to tolerate that well....for now. I hope you get some good advice, if not then it would be worthwhile seeking different support.good luck. X
Its 0.45 for men to. The low risk range for platelets is 1500 I think but if your Hcrit is too high then its low risk group is <400-600
I haven't been offered just living with Anaemia but it does seem like a good option atm
Gosh so young to start on drug therapy. The issue is we are all different, but all I would say is listen to your own body. What works for some people doesn't work for others, but equally numbers and counts are one thing but how you feel is another. Personally, although I have low ferritin I still run and keep active, I know my limits although I often try to push them. I do not want drug therapy and every time I am heading that way I refuse to accept it and keep pushing forward. I have changed my lifestyle and diet. I eat so much more plant based foods and found that my ferritin went up slightly. I take B12 spray which has helped with some fatigue although I do still get that, I am 42 years old and fitter than many who are same age or even younger. I think it is a shame that if we can't control our iron we are forced to consider drug therapy.
You don't say which MPN you have? PV?
I have platelets that go between 700 and 900 and they all shot up once and then guess what I got over venesected felt unwell and then it all started to climb up again and I feel fine. I do see a great nutritionist/kinesologist and I am pretty good at nutrition etc, so I manage well.
Personally, unless it is consistent change and I feel unwell or symptomatic I will not worry about platelets etc, I have met people who are well over 1 million and doing fine without any drug therapy, but again each of us is different.
Also, I am looking at alternatives to chemo drugs as I don't want to poison my body, but again that's my personal journey and not for everyone to understand.
Happy to chat more if you want to connect with me. Good luck!
My Haem said it couldn't be easily classified as ET or PV as platelets and red bloods are high.
I feel fine, eat well and walk/ run regularly so I'm in a similar boat to you. Its not the symptoms they want to treat it is my chance of clotting. I might be fine without treatment for years but then I might have a fatal stroke in a year or two so they are treating to lessen that risk.
I understand and possible by their standard.. you perhaps need to talk to people who are much older who have not had a stroke - prevention is better than cure but if some people can have 1 million plus platelets and the national danger point is 1.5million yours are not too bad if you don't have migraines or any other symptoms..
Do you take thinners? Aspirin 75mg a day? More if you travel longhaul? If so these all prevent clotting.. chemo drugs are more because if they can't venesect you because your iron will keep going down.. what is your Haemoglobin count? What is your ferritin? If you don't know you need to know ASAP.
I just think sometimes the Medical staff are over cautious which I totally understand.
With everything there are always risks and side effects so it is weighing up which is higher.. for me chemo is a no no forever for many reasons
Don't know Haemoglobin count but the % of haemoglobin in my blood (Haematocrit) is 49%. 45% or lower is what is condsidered safe. I imagine all those people will 1000+ platelet count have a haematocrit under 45%. While Hcrit is low up you re low risk until you are 1500+, with higher Hcrit you are high risk if platelets are over 400.
I do take aspirin daily.
I do get the feeling this is a little over cautious but I guess thats because i feel fine at the moment and a stroke is never something I've imagined myself having in my 20s
45% is a target it is not about safety as refers to your Red Blood cells, remember elite athletes actually train at high altitude to give themselves secondary polycythemia to make them perform better.. our issue is the quality of our RBC I understand that.
My HCT has been high and my platelets but if I feel ok then it's fine.. I know if I get migraines or any other symptoms I need to be treated.
Don't imagine, or assume check, ask and if you are not under Claire Harrison get her opinion. She has been brilliant with me as my old consultant locally would have had me on drugs a long long time ago. Claire always says I am still young and fit and healthy and believe me at 42 I don't always feel so young!
I think you should ask about Haemoglobin as you state you have low iron, so how do you know that? They will be looking at your Hmb to determine that, plus what is your ferritin, these are all very important too!
Do a bit more digging and research, ask more questions, don't just jump in.. once you are on drug therapy that's it pretty much as I understand it and the side effects can be worse than existing symptoms hence I won't go that route.
I think you should ask for the figures, I get my print out each time and file it so I can refer back, after years of no diagnosis I now like to have my own records and we need to manage our own illness too as much as the experts are there to advise and support us.
You have the right to a second opinion at any time - where are you based?
Because I have seen others on it.. they never come off.. and they have said avoid it if I can so unless there is no other option
That is amazing news! Claire really is the best so glad you got that advice. I am not qualified to give advice but I was a little concerned about what you were being told, so that makes me feel better knowing I was on the right track - long may you continue to be drug free too! x
Interferon is the best therapy for younger patients (as it is not chemo, and women can even be pregnant on it), and it can lead to JAK2 mutation remission. I have PV with high platelets and after 9 months on Pegasys 90mcg my counts are almost normal (HCT 0.41, platelets 450), with no venessections needed. If I were you I would give interferon a try, particularly if you can get the pegylated version (Pegasys) as you only inject once a week and it has less side effects. Good luck!
My platelets are always above 1200, but my haematologist said I still didn't need treatment at the moment. Mind you, I do have an other chronic condition, which may be problematic for any other treatment in the future. It seems no two people get the same advice, so I find it a tad confusing sometimes. Good luck, any way
Hi, I'm 45 and was diagnosed as JAK 2 about 3 years ago despite being completely symptomless (random blood test picked up high platelets). I was put on anagrelide for a few months but it never got the platelets down substantially and then started giving me palpitations. Went back to just aspirin & venesection for a couple of years and thought this would be me for the rest of my life. I was told as I had no added risk factor I could potentially go up to 1500 platelets (I was around 750). Then a few months ago I saw a different consultant and he recommended a bone marrow biopsy to get a better picture and this revealed smouldering myeloma. Although this only needs monitoring at the moment, my iron levels had also dropped too low to continue venesection and as my haematocrit was fluctuating between 0.47 and 0.51 the consultant recommended we started treatment.
It was a hard knock and the all chemo thing was quite scary but sometimes we have to also trust the doctors. I have now been on Hydroxy for 4 weeks and in 2 weeks my platelets had dropped from 820 to 609 (the lowest in 3 years) and haematocrit at .46. Going for another blood test today. I have been absolutely fine with it and if anything I feel better than I did 6 weeks ago, certainly less tired.
The haematocrit is keen to try interferon in the future as feel it is more natural but for the time being I am quite happy with way it is going. Reading on this page how people have been on hydroxy for years has been reassuring and an encouragement. All the best!
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