Hi Stoosh. Welcome. I’m a PV patient too and have been on Pegasys (45mcg) once a week for about 3 months and anti-platelet therapy (aspirin, then clopidogrel) about a year. Similar to you in my blood counts (over 7+ years but fluctuated) but I’m female, younger (53) and symptomatic for many years pre diagnosis. I am also high risk due to a tiny cerebral infarct last summer - my biggest reason for being convinced of the need for treatment in my case!
The Haematologist will want to keep your haematocrit below 45% as this is important in reducing thrombotic risk.
Pegasys hasn’t yet reduced my counts (platelets dropped but have risen again) but I started low and slow (45mcg) so they are increasing the dose and I will have a phlebotomy. I have (women’s health) factors that mean that without treatment I could reasonably have expected a potentially more dramatic rise in counts at this point; interferon may or may not have had some effect. This forum and the MPN Voice website prepared me for Pegasys perhaps needing several months before I would see my real response to it, so I’ll be patient.
I found it very helpful to see an MPN Specialist to get lots of questions answered in one go and to better understand pros and cons of different treatment approaches. Lots of great advice to search for on this forum.
I was on Pegasys for a while before switching to Besremi to treat the PV. Compared to hydroxyurea and venesections, the interferons have been more effective and easier to tolerate for me. My quality of life improved since starting on the IFNs. I feel better now than I did 10 years ago.
When on Pegasys, I was taking 45mcg/week. I would have had to increase the dose but switched to Besremi at that point. Now taking 175mcg Besremi/biweekly. It is worth noting that the standard starting dose for pegasys is 45mcg/weekly. Pegasys has a shorter half-life than Besremi due to its formulation. (80hr vs 168hr) This is why Pegasys is typically given weekly while Besremi is biweekly. Note that some do use Pegasys biweekly.
Side effects of IFNs for me have been minimal. Itching, occasional rashes, elevation in LFTs, and mild lymphopenia/borderline neutropenia. The itching/rashes are well controlled with a daily dose of cetirizine,. LFTs returned to acceptable with a daily dose of milk thistle extract. The lymphopenia/neutropenia are dose-limiting factors. The leukopenia is tolerable but I can not go any higher on my dosing. It is worth noting that side effects are dose-dependant. If you do encounter issues at 90mcg/biweekly then you may find it easier to tolerate 45mcg/weekly. This would be an issue to discuss with your hematologist.
I noted your response and the changes you made which helps you. I will keep it mind whenever I need to discuss with my Haematologist.
I would like to follow up that to find out from you what made the specialist to say you had PV in the first instance. Also how did he/she arrived at it to say you had or having Jak2 mutation if any.
I was diagnosed with ET over 30 years ago, before the JAK2 mutation was identified. The ET progressed to PV 11 years ago. I experienced a sharp spike in thrombocytosis and the erythrocytosis became evident. My old hematologist missed the progression. It was not until 5 years later that I was properly diagnosed. This is when the JAK2 mutation was noted. My old hematologist fired himself and referred me to a more knowledgeable colleague.
I also located a MPN Specialist for ongoing consultation. He is the doctor who let me know I had actually progressed to PV 5 years earlier, which was obvious from the CBC results when you know what to look for. This lead to my learning that not all hematologists are knowledgeable enough about MPNs to provide optimal treatment.
I am very fortunate to have an excellent MPN care team now. I have a wonderful local hematologist who handles ongoing care. I have a MPN Specialist who I consult with annually and as needed to guide my care plan. I automatically get two opinions on every decision and MPN expert consultation this way.
My diagnosis was triggered by the thrombotic event - the Stroke Consultant looked at my past blood tests and thought those and my (relatively young) age for an event warranted a Jak2 test (blood), which came back positive. The MPN Specialist said Jak2 and raised HCT make the diagnosis clear.
Thanks RoundTheWorld for the information. After receiving your first details yesterday I have researched and watched many video presentations on MPN and PV and related lots of informations. Those were mainly due to you alerting me to find out. Thanks for it .
Regarding Jak2 detection in DNA and subsequent PCR I have done only once. I haven’t repeated the test second time to confirm that the result is really reproducible and significant one. Why I am saying that is my HCL is not that high and mostly it is about 45. Of course once or so it was more. Also Jack2 was detected once with relatively low percentage. Not v low of course. I should have repeated it atleast once more before deciding to go for treatment. Any laboratory results need to be confirmed that those figures represent the real values before making major decisions. Even after repeating if it comes positive that is fine. But one is certain that we as well as doctors are making decisions and recommending treatments based on good results. Secondly after viewing the presentations last night I have come to conclusion that Platelet count of above 450 but not high values such as 540 are not significantly important once the patient has no other signs or past experience.
Once again your thoughts you provided were v helpful.
I was 69 when diagnosed after a series of monitoring blood tests to find out what was going as I had high blood pressure and other things.Platelets jumped from 400+ to 800+ during a regular annual check up and going north during the monitoring.
Started on Peg at 90/week for three weeks, then 45/week for two weeks, then and currently on 45 every 10 days all 0.5ml. Platelets now steady at approx 350-450. All with regular weekly blood tests for 3 months.
The thing to note is the effects peg has. Everyone is different and any symptoms change for the better or worse should be discussed with your specialist heamo care nurse.
For me, I feel more fatigued and losing my "puff" but that could be an age thing and initially a return of sleeplessness and depression but gone now mainly due to this forum. Worst one is, I have never been irritable and at least I recognise it and take myself off to my fish house.
I’ll stop writing lengthy posts soon but our counts are so similar I’m interested in our different experiences re. symptoms. The MPN Voice info. and videos have helped me loads too. I'm very grateful to Mazcd and all the team.
I wasn’t sure what you meant by the PCR bit? Did you have Bone Marrow Biopsy? (I have only had blood tests).
I initially had the same questions about why serious sounding treatment was necessary with relatively low (although persistently raised) counts. I think my highest platelets have been 563 and HCT .504. (When I mentioned modest counts the MPN Specialist commented that the HCT had been ‘properly high’ at that level). Hb has been up to 163 and yet ferritin (iron store) was always v low. Counts appear not to be the whole story but more markers that help somewhat in assessing risk.
I was symptomatic for years and then had the thrombosis, so for me it had became obvious that I needed treatment. I occasionally wonder whether earlier preventative treatment may have avoided the thrombosis (and migraine aura seem to have resolved since I started anti platelet meds) but there were other reasons why it was difficult to diagnose and it’s water under the bridge now.
Hopefully your haematology appointment will help answer your questions. Hunter helpfully posted a list of specialists (I saw one as a one off private appt) so I've added it below in case of interest.
PCR (Polymerase Chain Reaction): The extracted DNA undergoes a process called PCR, which amplifies the specific region of the JAK2 gene that may contain the mutation.
In other words it is part of identifying JAK2 presence .
I haven’t done bone marrow biopsy . Only blood tests carried out .
From what I watched and read from MPN voice HCT preferable to keep below 45 for male and below 43 for women .
For normal limit is .36-.53. But where there is some risk involved to keep below .45 for males and below .43 for women
in blood test results since 2005 I have Mild Thrombocytosis. But I have never experienced any effects of it so far .
When Haemotologist asked me to do venesection after that the HCT dropped to 0.4 . Then slightly increased from there to .46 in 9 months . 0.46 is the last HCT results before commencing treatment .
At the same time on the day the HCT was .46 , the MCV was low and RDW was high reflecting iron deficincy amenia.
With Pegasys injection certainly I have some side effects manageable though. Depressive at times, some body pain , night sweating etc. not sever though. I will get used to it I suppose.
one thing to bear in mind, if ET your counts themselves look reasonable but I would be careful with your Hct. 52 is high, even with ET you are at increased risk thrombotically , sometimes there is a grey area if it’s ET or PV , have you had a definitive diagnosis?, also people can shift from ET to PV, with PV Hct of 52 is far too high, you probably know it should be under 45 for males and some say 43 for female.
Started on 90 weekly. Now down to 45 every 3 weeks.
Has been nothing short of brilliant at keeping platelets in a very satisfactory range giving my consultants a lovely flat graph that they continue to be very pleased with.
Also I’ve lost the severe headaches & other symptoms I was experiencing before.
I find it excellent. I started on 45 weekly which was too strong then reduced to 45 monthly which has no side effects whatsoever for me & all bloods in range & platelets down to 260 from 590. I did not start on 90 as MPN advised low & slow to start. Do not expect quick results it is gradual but very good . I have bloods tested around 10 weeks & all been fine with occasional blips due to inflammation from such things as insect bites, Covid etc .
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