Chances of getting ill with or without intervention

[Cassie11]

Morning Maz. Do you know whether there are any statistics showing risks of having a stroke or heart attack etc with and without treatment other than Aspirin? Also do you need to take Interferon etc for rest of life?

Thank you

[Applesnpears]

Cassie. The risks of strokes etc will depend on a host of factors including your age, medical history, weight, diet, lifestyle, the type of MPN you have and your blood counts. Any generalised statistics would have little relevance to you as an individual.

I'm guessing that your doctor wants you to start taking medication to reduce the risk of clotting and you are concerned about possible side effects. This is understandable, particularly if you are generally feeling well at the moment. I suggest you speak to your doctor about your concerns and ask them to explain the risks and benefits - they will know you better than us.

Remember many people take MPN medications with few if any side effects and the consequences of clotting events can be extremely serious and can occur with little or no warning.

In general you need to take treatments for MPNs for the rest of your life. Some people have been able to stop taking Interferon for short or even extended periods but this is not true for everyone.

[Cassie11 in reply to Applesnpears]

Thanks Applesnpears. I'll ask the haematologist about this.

[Applesnpears in reply to Cassie11]

The other thing to remember is that MPNs are rare. This means that there is a limited pool of data on which to do the risk calculations you are seeking.

Add in the obvious variables such as age, sex, medical history and treatment type, the numbers in each category get very small. Small numbers can make the estimation of risk unreliable and potentially misleading.

It's also worth thinking about the consequences of the risks you are thinking about. Potentially more serious than a few days in hospital.

[Cassie11 in reply to Applesnpears]

Just been to an over 50s social meet up and one of the women's father had had an MPN.

[Applesnpears in reply to Cassie11]

Did he go onto medication to help reduce the underlying risks?

[Cassie11 in reply to Applesnpears]

No. He was just monitored but then he got worse when his wife died, he was offered treatment but declined.

[Applesnpears in reply to Cassie11]

Cassie, I've done a bit more digging and found a paper that compares the incidence of thrombosis in ET patients. Half were treated with hydroxyurea, the other half receiving nothing other than asprin if already used.

nejm.org/doi/full/10.1056/N...

After 27 months 24% of the patients receiving no treatment suffered a thrombotic episode. The percentage in the hydroxyurea treated patients was only 3.6%.

The participants in the study were a mixed group of ages, sex and thrombotic history. That means you can't use the study to assess the risk for any one individual but it gives a good indication of the benefits of treatment to reduce platelets.

There may be a similar study for interferon, I'll keep looking.

[Cassie11 in reply to Applesnpears]

Thanks. Has convinced me to have treatment.

[falconered53]

Hi Cassie11,

I got to see an MPN specialist and that was my very question. I am PV Jak2+ and was on phlebotomy and aspirin only at age 73. My haematologist of 8 years had never pushed hydrea, although he had mentioned it, and I was so fearful of putting poison into my body. But he retired and my new haem was aghast. My platelets had settled in at about 600-700 and I was on phlebotomy every 8 weeks for years, so my ferritin was down to 6. I was exhausted all the time, had constant headaches and many other symptoms. And I was afraid of a stroke! The MPN specialist agreed I needed to begin hydrea.

Anyway, the stats the specialist gave me (and I'm probably remembering approximately) were risk of a thrombotic event went from 32% untreated to 10% treated. I think that was for age 60+, but not sure.

Long story short, I've been on hydroxyurea for 3 months, my platelets dropped to 260 within 3 weeks, my symptoms keep improving and I look forward to fewer phlebotomies in the future. I'm scheduled for one this week, so it will be interesting to see if hematocrit is within rangeafter 8 weeks. I still fear side effects of the medication, but so far so good.

I hope my experience helps someone else who is on the fence about taking cytoreductive medication.

[Cassie11 in reply to falconered53]

Thanks for this. I am 68 so these stats help. My consultant wants me to go on Interferon but it seems to have more possible symptons, including sickness and thinning hair, but less risk of progression to anything worse, and I think you don't have to take it all the while. I will talk to her when next I see her.

Your medication seems to be working and it,'s good you are getting used to side effects. Happy Rare Diseases Day!

[katiewalsh in reply to falconered53]

Hi I assumed the difference in risk was much greater. And that I was better protected than that on HU & blood thinners. 10% beats 37 but is still higher than I expected. Have you great confidence in your specialist? Thanks, Katie

[falconered53 in reply to katiewalsh]

Hi Katie. This was the only time I saw this doctor, who is an MPM specialist at a prestigious hospital in San Francisco. My hematologist sent me to her. She was very knowledgable. She actually checked this stat after I asked to be sure she had the numbers right. At my age heart attacks and strokes are such a risk, even without an MPN. I was happy with the risk falling from 1/3 to 1/10. We have to do whatever we can in terms of exercise, diet, stress, etc. to try to be in the 90% who don't have an event! Best of luck to you.

[MoNut]

After 14 years I was taken off Hydroxy and put on to Anagrelide, after 3 months I had a Heart attack and had to have 2 Stents fitted. I’m back on Hydroxy now and platelets are still being monitored. I have had ET for 29 years.

[Mazcd Partner MPNVoice]

Hi Cassie, I can see that your question has been answered. Best wishes, Maz

[Johnsb]

Cassiee11

I'm not on interferon so I cannot speak to that question.

However, there is a graph, I can't find it, that shows less heart attack risk when your Hgb Levels are below 15 or 45%. I discussed this with my Hemo when I started on Hydroxy. I get a venesection when my level goes above 15. This also drives down my iron level, makng me more anemic. There are new studies that show an increased death rate associated with anemia, whcih most of us are if you should have a cardiac event. If you try to raise your iron level you also raise your Hgb level and requiring an increase in meds and venesctions.

So my plan is to eat as healthy as possible, I am switching to plant based - Dr.Greger, and exercise more frequently to reduce other risk factors.

As ApplesnPears says, MPN treatment is a lifetime affair and there are many other risk factors to consider that you can take action on.

Live long and prosper!