Hopefully this is not an irresponsible header since may raise false hopes, especially for those who can not tolerate Pegasys.
However the quote is from a highly respected MPN specialist today.
I saw him about 18 months ago and asked, if you were me, would you start Pegasys (I was coping on venesections at the time). He said no but he wouldn’t say I was wrong to start treatment.
Clearly a lot has happened in the meantime. Today I was asking about the future pipeline of new drugs. He said very exciting, lots going on. I asked if any sign of a possible cure. He thought more progression halting than outright cure. He is involved in a number of trials with promising initial results, especially since these trials are usually focused on the most aggressive cases.
But the kicker was that I am already on the best potential ‘cure’ drug as in it might halt progression for a lucky subset who respond well. Still not sufficient long term clinical data to prove it can halt progression for an extended period of time as opposed to temporary pause.
To repeat my opening comment, I was in two minds about posting this since some will have thyroid or depression issues that preclude Interferons and others will not tolerate the side effects nor achieve a haematological/molecular response.
However, recently there has been an increased number of posts from people considering or who have just started Pegasys.
My view is that if your Hem is willing to offer Pegasys, then worth trying to see if you get on with it. Many have no/minimal side effects. Start low and build up. Be patient, in my case my WBC can down immediately, Platelets soon after but RBC took 15 months.
I asked about the availability of Ropeginterferon, he said why change if Pegasys working for me. Said Ropeg is a different drug rather than just more refined (fewer side effects) than Peg. I had assumed a given that if Peg worked, Ropeg would be even better.
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Thanks for the info. Did your hem mention any of the trial drugs by name? Also, interesting that 18 months ago he said if he were you he would not start Interferon, yet now he is saying this is best “cure” drug available. I wonder what changed his mind? Thanks again for sharing this info. Exciting to know there are new drugs showing promise!
Re Pegasys, there have been recent encouraging trial results incl the Ropeg v HU trial.
I think that many Hems have tended to only prescribe Interferons to patients who are resistant to HU. Hence results have been skewered by cohort group having more aggressive/advanced level of disease. The camp who advocate Interferons, led by Dr Silver, believe that treatment should start as early as possible.
Thank you for posting this information. There does appear to be increasing evidence that Pegylated interferon alpha 2a can have disease modifying capability in a subset of MPN patients and in some patients achieve MRD as referenced in this interesting article. INF in combination also seems to be showing promise. All the best ! ncbi.nlm.nih.gov/pmc/articl...
I am interested to read your comment about Ropeginterferon being more refined and so fewer side-effects that Pegasys. My haema keeps telling me he's very happy with me because Pegasys is keeping my platelets within normal range but he is totally disinterested when I tell him about the continual side-effects I suffer.
I am so happy that he agreed for me to have Pegasys because Hydroxy gave me such dire problems. I was clearly, severly allergic to it. I refuse to accept that the pain, discomfort, fatigue and depressions could be called 'intolerance'. However, I have been using Pegasys since June 2018 and side effects are increasing rather than decreasing. continual aches and pains, permanently 'snotty' and bunged nasal passages and lungs, night-sweats, fatigue, depression (nothing like as bad as it's been and intermittent so bearable), inability to concentrate, brain-fog and headaches. Oh, and very high blood pressure. Queasy tummy is another but one I take as read. It doesn't bother me.
So, my question is, has Ropeginterferon been considered a drug which can halt progression?
Best regards and good wishes for your continued progress.
Please check out the Ropeg v HU trial. A google search should find it or see my past posts.
Short answer is that it appears to be at least as potentially ‘disease modifying’ as Pegasys. It is taken even two weeks rather than weekly. Mooted as being more easily tolerated than Pegasys
I'm on 45 mcg and never needed more. From weekly, I now administer every 10 days but having suffered high blood pressure, minor stroke and many TIAs, all of which in my opinion have been due to non diagnosis over around 20 years. As a consequence of doctors trying to get me on blood pressure lowering drugs, I discovered I am really intolerant of any of them. they make me really ill and since I've been on chemo, the intolerance is worse. I have high cholesterol and have extremely painful responses to statins. I must admit to being rather worried but have no idea what I might do to improve this. I'm active, I do not eat meat, fats, dairy etc. or drink alcohol. I'm slim and reasonably fit in the circumstances.
I just wondered if I could use a drug change to remedy my high blood pressure. It's a question for the haema on the 19th. September....!
I was the same with very vets high blood pressure. I couldn't tolerate a lot if the tablets either...until they. After 2 years of struggling gave me doxazosin. A vaso dilator tablet with my ramipril. Life changing. My blood pressure came down virtually immediately!!@ theres also been a study, I don't have the link, that showd that interfering can cause high b.p....
Thank you for your reply. I have tried that particular drug but it didn't suit. I'm managing a very low dose of lisinopril and suffering the side effects but sorry to say, my bp is worse rather than better. it does make me want to stop trying anything. i feel much better without!!!
I'm only on 1mg. It's working just fine..the chemist didn't even stock it in that low dose and had to order it...I hope you find something that works for you x
I started Pegasys in Dec 2016. At the time I could read the positive trials. My consultant didn’t agree. I fought the battle and was prescribed Pegasys. My blood levels have been stable for over a year. Last venesection (which I didn’t tolerate well) was Jan 2018.
Doing the financial maths. While on venesections I was admitted to hospital on 3 occasions. This alone gives a financial benefit to the NHS, due to stable blood levels and less stress on my organs.
I am trying Pegasy although the MPN expert I see still is not on board with me and Pegasy but said it would not hurt to try it. I do have a very low TSH and previously got AFIB from my thyroid levels being so low. My GP agrees with the expert that is would not be the drug for me. I am much older, Jak2+ and have platelets that have hovered over a million for years. So I am going to give it a go at a low dose and see what happens. The one thing I find interesting is the MPN expert I see who is a renowed expert says the New Roginterferon designed for MPN's (I believe it is called Besermi or something like that) is the same formula just Pegalated much more so last much longer and fewer side effects. I do believe once it hits the market all around the world the old Pegasy will become non-existent and these medicines are driven by demand and we all know the Pharma companies are driven by demand of the products.
Thank you for sharing this information. I have been on Pegasys since July so it's all very new but my consultant has said that it has started to work and looks promising.
PV. I should stress that Pegasys not an actual cure but according to my Hem, closest of the currently available drugs to slowing progression. But only for a subset of patients who respond on a molecular level.
I’m intrigued as to why some respond better than others.
Have they got a less aggressive form of PV/ET?
Is it related to inflammation. Perhaps high levels of inflammation block the pathways Pegasys uses. I have TET2 mutation as well as JAK2, the very limited trials to date indicate that Pegasys should be less effective on me because TET2 inflammatory and blocks Pegasys pathways. Ditto for smokers.
I’ve had a great response to Pegasys and wondering if it’s because I try to reduce inflammation as much as possible - anti inflammatory diet and anti inflammatory supplements such as NAC. Plus exercise
Paul, I appreciate your well written posts. I'm excited about Ropeginterferon but my doctor said who knows if it will ever be approved in the US. I haven't started PEG, but your story inspires me to give it a try.
Re Ropeg v Peg, I asked my MPN specialist whether I should switch and he said no. I assumed Peg same as Ropeg, only slightly better and more refined. He thought subtle differences and why change a winning formula.
So if I was given chance of starting either Ropeg or Peg I’d choose Ropeg. But if only Peg available I would not hesitate
I am excited that the U.S. FDA has accepted PharmaEssentia’s Application for Ropeginterferon Alfa-2b to Treat Polythycemia Vera. I might hold out for its approval (estimated early 2021) instead of starting PEG.
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Change from Interferon to Pegasys 
Jakafi Dosing 
What to expect at start of Pegasys?
