I am now 64 and was diagnosed with polycethmia Vera in January 2021. I have the JAK 2 mutation) My haematocrit was very high at 0.8 . Since then I have had a lot or venesections and it is now 0.5 .my target is 0.45.
It has been suggested that I start on interferon alpha. Does anyone have experience of interferon alpha. Any thoughts or comments would be appreciated. Thanks
Hi, I'm Jak2 positive PV too. I started on the same treatment/outcomes as yourself then moved to Hydroxycarbamide 4 years ago because my platelets were still high. I have a telephone consultation with my clinic nurse tomorrow and I'm requesting to be moved onto peg interferon, as I'm not feeling great on HU, so I'll be interested to see your replies.
Good luck
Do you mind saying how HU is affecting you?
Hi, My bloods are all stable but I'm really struggling with fatigue and I have an ever growing list of PV symptoms that are getting troublesome, so I feel that the HU isn't helping. My consultant did say it could be down to the HU and I've had various blood tests to rule out other possibilities
I know this is probably a stupid question but what is HU and what is IFN
HU is Hydroxycarbamide also know as Hydrea. IFN is interferon. Both are treatments for MPN's. Have a look on Hunter's posts last week. He added a link to a booklet about MPN's and treatments which has a glossary of terms around MPN's. You'll get to know them quickly. Also, if you look on this site there are publications that you will find helpful.
And of course you can ask people on the forum 😊
HYDROXY UREA....Most do not understand abrieations unless they are on the Meds, I also have Jak 2 Gene
Hello and welcome to the ongoing discussion we have been having about the IFNs. Most of the discussions have been about Pegasys (PEGylated interferon alpha 2a) and Besremi (ropeginterferon alpha 2b). Besremi is the newer monopgyated formulation of interferon that is specifically approved for PV. Pegasys has been around longer and is in common use for MPNs, but is actually being used off-label.
I have been posting regular updates on my experience with Pegasys and Besremi. There are a number of others who have been posting their experiences, including EPguy, Pat032018, and more. A simple search will turn up these threads if you care to read through them.
The short version of my story is that I have PV. I am hydroxyurea-interant, experiencing toxicity even at very low doses. I tried venesection-only, but the iron deficiency symptoms were worse than the PV symptoms. I started on Pegasys back in May 2021 then switched to Besremi in February 2022. I have responded better to the IFNs than I did to any other treatment option. I respond well at low dosing levels and the side effects of IFNs are far more tolerable than anything else I have tried. In addition, the IFNs are the only treatment option that appear to be disease modifying, actually reducing the level of the JAK2 mutation for some people. Besremi research indicates that it can also increase MPF-progression free survival.
Based on my own experience and review of the literature, I believe that the IFNs are the best treatment approach for PV that we currently have for many of us with PV. This is dependent on the unique way your MPN presents, your treatment goals, risk tolerance and preferences. After you review the literature and the experiences of others here on the forum you can make a good decision for yourself.
All the best.
I started on HC and am now on Besremi. Both so far control(ed) my blood counts. As Hunter noted, I have posted on my journey and interferon in general.
You should discuss venesections with your Dr and do some searching on it. When used heavily and/or for prolonged periods it can disrupt your iron balance. Hunter is very knowledgeable on this area as he describes here.
Interferon (INF) is increasingly being considered for MPNs, esp with the recent approvals of Besremi for PV. Many members are also doing well on the older INF, PEG. INF may have long term benefits that other therapies do not; you can see many discussions here on this possibility.
HC may also be an option if you and your Dr opt to avoid prolonged venesection therapy.
At 0.50 your Dr likely told you you should seek further reductions, 0.45 is a goal for male MPNs. This may be another reason to seek alternates or additions to the venesections if you are having trouble reaching the 0.45 level on venesections alone.
I, too, like Hunter and EPGuy have PV, JAK2+ and have tried various drugs during my 8.5 year journey with this disease. So far I've had the best results from Besremi. Just a note: venesection lowers the hematocrit quickly, but eventually leads to serious iron depletion as well as a rise in platelets. Also, many hematologists want to start people on a dose of Besremi or Pegasys that's too high and causes a lot of side effects. Better to start low, 45mcg/week Peg and 50mcg Besremi/2weeks. Dose can be increased gradually if needed.
Hello In my experiency you must know your allelo burden (VAT) of your genes. A test of NGS must be haved, EPO levels, and a Bone Marrow Biopsy. Then, you must decide the proper traitment. Everything is very important. Good luck!
I have ET rather than PV but I’ve been on Pegasys for nearly 7 years now and it has controlled my blood counts very well, with no significant side effects. I’ve managed to reduce the dose and intervals since my counts normalised and am just using 45mcg every four weeks as a maintenance dose now.
Wow that’s really low, what dose did you start on? I’m 90 every 10 days. Does fatigue decrease with lower doses? ( I’m Calr Et)
I started on 45mcg weekly as a test, then up to 90 weekly. Once my counts came under control I started to extend the interval to 10, 14 then 28 days. As that was still working and my white count was a bit low I then reduced to 60, then 45mcg, which has proved to be enough to keep things ticking over. Fatigue hasn’t been a big issue for me but logically a lower dose should have less of any side effects.
Wow I’ve been on it 90 every 10 days. Since June. Platelets mid 300 I’m hoping I can go to 12 days soon but I can’t have platelets above 400 I feel lousey then x
Way back in 2011 the Danish MPN specialists had already recognized the unique capabilities of interferon and were already prescribing it as a first choice treatment for PV and ET; e.g. in 2011 Dr. Hasselbalch wrote:
"It is argued that in 2011, the bulk of evidence for the efficacy and safety of pegylated interferons in treating patients with these neoplasms favors the upfront use of pegylated interferons, the goal being to influence the development of the disease at the molecular level and revert patients to a stage of minimal residual disease/operational cure instead of progressive clonal evolution, genomic instability and leukemic or myelofibrotic transformation during long-term treatment with hydroxyurea." pubmed.ncbi.nlm.nih.gov/220...
Interferon is slow to reduce RBC/HGB/HCT counts, however, so you can expect to still need phlebotomies over the next few years, but you may be able to gradually stretch them out after the first 6-12 months of treatment. Interferon is usually quick to lower WBC & Platelet counts so symptoms like dizziness, occular migraines and easy bruising may resolve fairly quickly.
I'm not a doctor, but given that your HCT was initially extremely high (0.8) you may have an aggressive case of PV, hence you may end up discovering you need moderate to high doses of interferon. The anecdotal evidence to date suggests Pegasys interferon is often more easily tolerated than Besremi interferon so if you have a choice to start with either one you might want to suggest to your hematologist to prescribe Pegasys first.
Dr. Dr. Hasselbalch's article inspired me to start using Interferon for my PV. I simply waited until Besremi was available in the US.
Interferon (in my case pegysus ) is a good choice. My haematologist told me it can very occasionally put you in remission which is good news for the future. Injecting is easy so don’t be worried about that. I started at a low dose of 45mcg to get the body used to it and had hardly any side effects. You must drink lots of water but then you need to do that anyway with pv. Good luck and let us know how you get on.
Hi, I am 72 PV and taking HU for one year in July. Doing well so far. If I can convince my hematologist when I see him in July, I would like to try one of the interferons. I would try Peg or Besremi. It seems that the literature is coming around to recommending interferons for a first line treatment for PV. The possibility of a long term benefit with interferons is compelling. The possible side effects on interferons, I have read, are something to consider. Many on this forum are on interferons with excellent results. Find a mpn specialist you trust and follow their advice would be my recommendation. Best to you going forward.
Hi, I have just taken my first three x 3 weekly PEGASYS and my platelets have come down to 495 already. I had some fairly severe bouts of the runs and sickness but nothing after the last of the three injections. It works for some and not for others and we all have different reactions, just try it and see how it goes!Best wishes
I went on to hydroxycarbarmide for a short while but my platlet levels fell significantly and I was told by the doctor to stop taking the hyroxycarbarmide pills
You have ruled out HC, that is helpful to know what doesn't work as a start. You may have had a high dose of HU to address the HCT, but it was then too much for PLT levels.
In posts here some members find that INF is slower to act on HCT than on white blood cells (WBC) and platelet (PLT). I have seen some of that myself. But it normally does address HCT after time. My Dr says this is normal. But in your case it may mean your INF dose could be limited by WBC or PLT response, so you may need to continue venesection for a while, but maybe lower amounts.
Is anyone with PV on interferon?
Interferon
