Hi all I’ve had Polycythaemia vera (PV) for just over 2 years and been taking asprin + Venosection. My last venosection interval was 6 months which was monthly when first starting. I had a 6 monthly consult today to be told having turned 60 I would be started in Hydroxy.
I questioned why and it was based on age. I alsi asked about Interferon A and was told I could have that if I was willing to self inject.
My question is; is it normal for this switch to be made based on age alone rather than symptoms change. And if yes what are the Interferon A options now and which has the lowest side effect rate.
Hi @DougyW good to hear from you again, although, naturally, you are concerned about being told that now you have reached 60 yrs you will be starting a different treatment.
The questions you ask are best asked of one of your medical team as they know you and your whole medical history.
Do you have a nurse contact or consultant you can contact?.
Perhaps you might write down your questions first. You have the questions in your post that you would like answers to and you might think of others.
Perhaps be pleasantly assertive and ensure everything is covered.
Perhaps others can share their experiences on Hydroxy and Interferon A .
As for the lowest side effects that is often individual.
Please do let us know how you get on and really look after yourself.
@DougyW - it seems 60 is the magic number. I recently turned 60 and had an appointment with my rather fab consultant shortly after. He mentioned the associated risk of blood clots and stroke on reaching 60. I said that I understood that, but as an individual who does not smoke, eats a relatively healthy diet, walks a lot and has a healthy haematocrit level, I believe I am low risk. He thought about it and agreed that he hadn’t considered that. So, please advocate for yourself and if you consider your risk to be low, then please say so. We know there might come a point when it’s non negotiable and accept that.
I would never have spoken up for myself before but I feel strongly about taking medication that is not necessary at this time. Best wishes and happy self advocating
well this could be interesting on Monday as seeing the hospital lot for the first time in three months, despite asking for an earlier appointment after some interesting symptoms.
Having turned 60 during the diagnostic process and being given aspirin and a couple blood letting rituals with the sacred biscuit and tea in the first two visits, it will be interesting what my guy suggests.
Will let you all know if this is an age trend
Hope Monday goes well for you, please let us know.
I was also told 60 was the age when i needed to change from asprin to hydroxy. As i turn 60 at the end of this week i assume it will start at my next appointment. Platelet levels have been monitored and are just below 1500 which is the level i was told i would need to change if it exceeded. My main cancer is Chronic myeloid leukaemia and no reason for the high platelets had been found even though they seem to have checked everything.
Trust all went well with your appointment.
@DougyW c&p from another post, though I had to photograph the sheet in the leeches department as the docs didn’t bother to tell me the numbers.
Ok for the tick toc guys at the starting gates, in best BBC Football results voice:
Science Haematocrit .45 v My Body .58 away win
HB 194 awaiting pools panel ruling
To those of normal disposition, numbers are up, a quick chat with the trainee and then the big guy and off you toddle to the leeches and book yourself in the first week of Jan for leeches as well, toodle pip and see you in 8 weeks.
One slightly milky almost tea drink and a few ginger nuts later, one pint or 500mls in new money of dark red stuff in the back of the net and off for an early bath.
Because of the impact of the car crash on an already enlarged spleen, guess the guys in the suits want to check there is no damage as I seem to be producing the red stuff better than an EU wine lake
Keep buggering on and believe in yourself. At least its still venosection.
@DougyW thanks, think the conversations will have to include me more in the future with the docs as it only took 3 months to get that high.
Meant to add. If you get the NHS App all of your test results are shown. I find that very usefull
As an update I opted for Pegasys. 45 mg per week. Im weeks in, the injection is easy and I’ve had no real side effects.
Ive listened to several webinars on Myeloproliferative neoplasms (MPN) treatment and all say Inf is shown to reduce JAK2 mutation rates. For me thats the outcome I want as that is thought to reduce the risk of progression.
Heres hoping. Id love to hear from anyone whos been on Inf for a while, whats happen to their JAK2 levels and HCT etc.
@DougyW glad that you have chosen an option and you have found the injections easy.
Do keep posting how you are doing and I hope others can share their experiences.
Look after yourself