Hi all
I'm doing lots of research and I think I've got my head around most of this. But what I can't grasp is why some people are only on aspirin and phlebotomy and others take other medicine. Can I ask what it was that moved you to extra treatment and how long had you been diagnosed?
Thanks.
Hi Emerald. I was 33 when I was dx with PV Jak 2+ & I was put on Warfarin immediately because I have a big blood clot and a few smaller ones in my Portal Vein (how your liver gets 70% of it's blood supply) and also then Interferon Alpha as they said I was too young for them to put me on Hydroxy, that all changed when I was admitted to hospital for being poorly on Interferon to which they changed me to Hydroxy and have been on it since. I've had one phlebotomy in all that time and sometimes take either iron tablets or have iron infusions (farinjet)
I probably should point out I have Liver Cirrhosis too and on the transplant list. I think people end up on different medications due to history and effects of medications. I suffer with a lot of side effect's from the Hydroxy although my bloods are stable so have compassionate grounds to move on to Ruxolitanib (sorry about the spelling) however they can't start that until I have had my transplant.
Things happened very quickly for me from finding out my dx to starting medication it was a matter of a week or so...there were no other options for me. I was never just watch and wait like some people.
Hi Emerald,
I was diagnosed with PV at the age of 51. I was pit on Aspirin and had venesections 2/3 times per year. I commenced Hydroxicarbamide at the age of 59. My platelets were around the 800/900 mark and as the risk of stroke increases with age my haematologist wanted me on by the time I was 60. I have been on hydroxy now for 3 years with no problems or side effects and my platelets are now around the 300 mark, with a little tweaking every now and then.
Everyone is different, there is no 'one size fits all'. I go on my haematologists advice with a little discussion if I have a different opinion!
Best wishes
Judy
Hi Emerald,
I went on medication after about 6 months. I had so many venesections that the platelet count was about 900. Also my white count was in the 30s although this wasn't considered a problem at that time.
Interferon brought the counts back to acceptable level but over the last 12 years i have had venesections. I have now been stable for about a year. HCT 38/39 platelets 180. The HCT is a bit low but I feel ok at this level and as soon as it gets to 40 it rises quickly and I am back to venesections which I want to avoid.
As others have said we are all different and our personal health and history plays a big part in whether we take meds or not. Hope you get the information you need. I have found it pays to know as much as possible. And reading these posts helps to fill in the jigsaw.
Good luck
Mairead
My husband diagnosed PV jak2 4 years ago at age 47 via blood tests for something prostate related. He was immediatly put on aspirin and hydroxy. Has very few side effects and levels been fairly stable from about a year in
Here's my understanding: it's all based on reducing the risk of blood clots and stroke caused by thicker blood from higher platelet/white cell/ red cell blood levels.
If your counts are not much raised and you have no other risk factors (such as age) you may just be on aspirin to reduce the "stickiness" of your blood and thus the risk of clots or stroke.
If your counts and/or risk factors are higher you go onto hydroxy and/or phlebotomy to get the counts down: repeated phlebotomy alone may not be suitable because it can produce abnormally-shaped platelets which are "stickier" and therefore higher risk. Also if your problem is raised platelets phlebotomy isn't much help because platelets have such a short life span, u replace them every 5-10 days, so you might need a phlebotomy very week if you don't take some hydroxy as well.
For some people hydroxy is less suitable for a variety of reasons so they get something else that depresses cell production.
I think that's the gist of it!
Hi, As you can see from your replies already we are all different and its no one size fits all. This is where a good Heamatologist comes in as its up to them what your treatment is. I was diagnosed with ET Jak 2 negative 4 years ago at age 66 and put on 1 500mg hydroxy a day plus daily aspirin. My hydroxy has now been increased to 1 per day with 2 at weekends plus the daily aspirin. This keeps my platelets down around the 300/400 mark. I was told at diagnosis that had I been below the age of 60 I would be on aspirin only until 60 then onto Hydroxy.
Keep up with this site and you will find lots of variations on what people take at the various ages and stages of their mpn. Regards Sue
Thanks everyone!!
Hi Emerald,
When the platelet count is high, the haematologists usually put you in a risk category. In the case of diagnosing an MPN, If you appear well in other ways, they use just aspirin to keep the blood thin.
In my case, I have had two TIA's and I am over 60, so considered to be high risk. This is why I am on Hydroxycarbamide and aspirin.
I am probably oversimplifying, but I am told that it is why I have to take hydroxy.
Hope this helps.
Kind regards,
Marcia
I was diagnosed at 37 (2 years ago) with ET (Jak2+ via a bmb) after a routine physical showed all my red cell lines to be elevated, and was swiftly "upgraded" to PV due to my very high HCT levels. In fact, looking back, my HCT was in the very high 40s when my platelets were in the 500/600s - so I've really always had PV. I placed on daily low dose aspirin and venesections (phlebotomies here in the US) as needed. This treatment protocol was because of a few factors: 1. My age (under 60) and therefore considered low risk, 2. No prior history of clots and 3. Platelet count under 1million.
I began interferon alpha 2a (Pegasys) about a month and a half ago because my platelets finally hit over 1 million. I was actually pushing to get on to interferon sooner because of the evidence that it has the ability to put people who are Jak2+ into remission. My hematologist didn't want to and kept pushing to wait and watch, until my platelets hit 1 million. (I imagine this also has a lot to do with insurance and the cost of interferon: if he couldn't justify putting me on it, he would have a hard time getting it covered).
I started at 90mcg/week for 1 month, with no side effects. My dosage was then upped to full strength 180mcg/weekly, which I could not tolerate (splitting bone pain, excruciating muscle cramps). My dose was lowered to 120mcg and I am tolerating it perfectly - no side effects. My platelets have gone from 1134 to 704 in about 6-7 weeks, although it has not been a straight decline - I have had a couple small increases here and there (though they have remained under 1 million since starting Peg interferon).
I also continue to take low dose aspirin daily, and I drink about 2-3L of water a day to keep things moving and to encourage waste removal
Hope this information is useful. Take good care!
Sharon
When to start medication?
Diet + Exercise for PV
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Why same treatment for PV as ET?
