I have ET & PV with Jak2. I am 40. I have been on aspirin for over 10 years, but had to start Pegasys 3 months ago.
I haven't tolerated it well. Severe shortness of breath etc. My hematologist reduced my dose to 30 per week, but I am suffering with hypertension (150 to 69/96 on average) and arythmia. Prior to treatment, I was in the 127 range.
I have been told now by my hematologist that he will be taking me off Pegasys, as I can't tolerate it.
I am very dissapointed (and scared), as I understood that it was by far one of the least "agressive" treatments.
I have my appointment with him next week.
Would anybody be able to recommend any alternative treatments ?
Thank you very much.
Mary
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JustKeepSw1mming
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As far as I am aware you can’t have PV and ET , maybe you went from ET to PV?
Currently the alternative drugs for PV are Hydroxy or Ruxolitinib , most docs prefer not to put someone your age on Hydroxy. Do you need to be on meds currently?, some low risk patients your age are often treated with venisection only assuming it’s PV.
Hope you are keeping well and thank you very much for replying.
I started with ET, but my tests changed and I was told it is PV now. My hematologist told me it can evolve. I was not sure if that meant I had both, as my platelets are still high. But you might be right
I was happy to be just on aspirin, but my platelets started going up to 1200 with hematocrit around 49. My hematologist told me we had to start treating it.
He told me that venesection would not be suitable for me, because of my platelet count.
Sounds as if you have PV now, it might evolve eventually to MF but the majority don’t, also treatments are changing fast so I wouldn’t worry about that at your age. If you need meds and sounds as if your platelets do then the remaining options assuming you can’t tolerate Peg are as I mentioned, there is a possibility you could tolerate Besremi but it’s very similar to Peg, possibly worth a try though.If you are not comfortable with your haems suggestions it’s often a good idea to see a MPN Expert who can keep you and your local Haem going in the right direction, you’re young and it’s important to find the right treatment and docs as MPN will be part of your life for many decades.
I have heard of Besremi, but it sounds like it is not available in France yet. I will ask on this group if anybody else had any luck with getting it here.
I have PV JAK2+ also and it started with ET. I’ve had it seven years now. Last year, I started Hydroxy. It has worked really well for me. I am still beyond exhausted but my blood is stable now. I had no side effects from the medicine. I was terrified of it, but it has been fine. Maybe give it a try.
Did you see a cardiologist? I would get their opinion before I would totally shut the door on interferon. You are young like me. I am 41. I am on Besremi. Now when I see my oncologist my BP is crazy high, but I check it at home and work and it is 116-122/70’s. But is ridiculous when I see the oncologist with that automated cuff. But they walk me back and sit me down take it immediately while I am talking! Good luck. I am hoping that ainslie is right and they have something new for us soon.
Another commonly used option for PV is Jakafi (ruxolitinib), which in a different class of drugs (JAK-inhibitor). Given that you did not react well to Pegasys, that may be the next option to consider. Besremi (ropeginterferon) would be an option but is in the same class of drug as Pegasys. Some people do react differently to Pegasys and Besremi though. As others have mentioned, many prefer not to use hydroxyurea at your age due to the risks associated with long-term use and the risks for use of persons of childbearing years.
A more fundamental question is whether you need to use cytoreductive medications with your PV profile. Have you had thrombotic incidents or do your PV symptoms justify the intrinsic risks of cytoreductive medications? While it can have its own adverse effects, it is common to use a phlebotomy + aspirin protocol for someone with PV your age. Note that it is primarily the erythrocytosis that puts you at risk for thrombosis, not the thrombocytosis.
It sounds like you followed a similar path to mine. I was originally diagnosed with ET in my 30s. It progressed to PV (with both erythrocytosis and thrombocytosis) when I was in my 50s. ET and PV are distinct disease entities though the line between them is not always clear. I was unable to tolerate hydroxyurea and was refractory to it. I am doing quite well on Besremi but not everyone can tolerate the interferons.
Suggest you review all of your options with your MPN care team. Hopefully, your team includes a MPN Specialist who can best advise you.
Thank you very much (as always), Hunter for your reply and for sharing your knowlegde.
I think my hematologist was worried that my platelets and hematocrit were going up. He told me, it is not urgent, but more a treatment to prevent issues in the future.
I will see what he says tomorrow.
I don't have an MPN specialist yet. However, I think I should look into it now!
Thank you for your support and wishing you all the best.
I would suggest like others that you consult with an MPN Specialist, who may not find it necessary to stop Pegasys at this stage, but find ways around it.
Three months on Pegasys is a very short period of time to see any positive results. The viscosity of your blood could well be the culprit of an increase in your blood pressure, shortness of breath etc rather than the interferon.
Are your haematocrit/platelet values still raised? This equals viscosity and notably your heart has to work harder to push this viscous blood around your body.
I have ET but had borderline haematocrit values at diagnosis. I’ve always had blood pressure readings around 110/70, but prior to my diagnosis the systolic value had increased to 125/30 (high for me). I thought it was age related. Once I received my MPN diagnosis and commenced treatment with hydrea my counts were normalised, low and behold systolic value back down to 105/110!
Having said all that, it could be the Pegasys too. Guidance from an MPN Specialist is warranted in cases like this.
Another thought would be for your haematologist to prescribe hydrea (short term) alongside Pegasys to get your counts down quickly. Hydrea in most cases is quick acting. When the Pegasys kicks in fully the hydrea could then be ceased.
These are just my thoughts.
Consulting with an MPN Specialist is the best thing you can do, particularly as you are so young.
And thank you for sharing your experience! I have so much to learn. For years, I guess, I was affraid to do more research, pretending nothing was wrong. But now, that my results are changing, I feel I better take control.
I am so happy to find this group with such wonderful and supportive people.
I saw my hematologist yesterday. He has put me on Hydroxycarbomid to take my current levels down, while they (a committee, apparently ), consider a long term treatment that might be more suitable.
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