I’ve been diagnosed with PV some 3 years ago. My current treatment is aspirin and phlebotomies which have worked well. However, my symptom burden is slowly increasing. I am experiencing increased brain fog, decline in cognitive function, and bone pain. NAC (2-3 x 600mg per day) has definitely helped with the bone pain (sternum).
I am anticipating that soon I will need to add some additional medication. The drug of choice I am inclined to initially try is pegylated interferon, either pegasys or besremi, if available in the US soon. I am calling on patients who have used and/or are still using interferon. How does/ did it work for you? What were your side effects and quality of life? For how long is interferon treatment effective? Does it help prevent transition to myelofibrosis?
Thank you my fellow travelers!
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Loooonglife
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I was diagnosed with ET about 10 years ago and initially started treatment with hydrozycarbamide - however after a number of years this didn't control my blood counts effectively so I was moved onto interferon alpha.
The transition was phased to increase the level of medication as there are some well documented side effects for interferon including the flu like symptoms which I did experience, but on the whole I found the transition quite tolerable. I took paracetamol to reduce the aches and headache and always took the injection at night time.
It was also encouraging that my platelet count reduced significantly. However after about 18 months I did find I had problems with my emotions - I found it hard to think straight and also was easily upset so in consultation with my medical team we agreed to decrease the dose of interferon to see how I coped - the results were my moods improved and my counts held so I continued on a much lower dose.
Earlier this year due to inconsistency with the supply of the type of interefon I was taking, along with other patients at the clinic I attend, I changed to the pegasys variety of interferon. I have had no side effects at all with this version and my counts have returned to almost normal with a much smaller dose of medication taken a longer intervals apart which is great news.
I'm not sure how patients with PV react to interferon but I'd personally recommend giving it a go if you can and your consultant feels it is the best option. They will monitor you for the other potential side effects which for me have been manageble to date.
Like you I have PV and until this year was being controlled just with phlebotomies, but age and blood counts meant I needed to start taking medication and since a January have been injecting PEG Interferon. Starting on 45mcg a week, increasing monthly until now where I am on max dose of 135mcg
It was a struggle with side effects at the start, but persevered and 6 months later, am tolerating it a lot better.
It’s been slow(ish) to work (platelets were 1500 now just below 1000).
I believe from the conversations with my Consultant, that it is becoming the most common way of treating PV here in the UK - although do understand it’s an expensive treatment compared to other options
Glad to hear you found the N-Acetylcisteine to be helpful. There is some evidence in the literature that is can help with the inflammation that accompanies MPNs. My Integrative Medicine doc had me try L-Glutathione , which is what the NAC increases in the body that helps. Hopefully the research will continue to yield results that can help with the secondary symptoms so many of us experience.
At Age 64 with PV I am still using a phlebotomy-only treatment regimen on the advice of the MPN Clinic at Johns Hopkins. It does seem to be working fine for now. When I do need to go back to including a medicine (note hx of hydroxyurea intolerance) I will definitely opt for PEGylated interferon as a first choice. Like you, I am hoping Besremi will be approved by then. The research on the PEGyated interferons is favorable. It can lead to molecular remission for some. There is some evidence that it may delay progression of the MPN, but that is not a certain thing.
Please do let us know how things go. All the best to you on the next stage of your journey.
Hi hunter5582, great info as always! Can you share your understanding of molecular remission please? I’ve seen it mentioned and am curious to understand its significance.
Sorry to hijack your thread Loooonglife! I imagine it’ll be of interest to you too
Molecular remission = a reduction in the JAK2 Mutant Allele Burden. Some people have achieved complete molecular remission (No detectable mutation). This tends to be accompanied by a reduction in symptoms. Some have had values return to normal, at least for a period of time. It is thought to be possible that this may delay disease progression.
There is an emerging body of research and understanding of molecular remission is growing. Truly understanding all the research requires a higher level of knowledge than I have, but i cannot help but to think that a significant reduction in JAK2 mutant allele burden would be a good thing.
Perhaps some of out other more knowledgeable MPNers can weigh in with what they know or have experienced. I am sure we would all like to know more.
Hi, I also have PV (with high platelets) and have been on Pegasys for 5 years with excellent results. I started at 90mcg/weekly then after a year reduced to 45mcg/weekly, then every 2 weeks, then every 3 weeks, and recently went back to injecting every 2 weeks as the platelets started going up a bit during lockdown. Pegasys has been great for me, normalising my counts that were initially at 1.5 million for platelets and 0.50 For HCT. Now platelets are around 400 and HCT is 0.40.
I don’t have any side effects at the lower 45mcg dose. At 90mcg I developed a very sore mouth (which turned out to be oral lichen planus, an inflammatory condition likely caused by the interferon), dry mouth, and hair loss/thinning. The sore mouth improved over time and is manageable with a steroid mouthwash when it flares up. The hair loss subsided after a few months and stopped at the lower dose. The dry mouth persists and I use Biotene dry mouth gel when needed. The first time you inject you may feel some flu-like symptoms but that only happened to me with the first ever injection and it was mild - so just inject at night and take some paracetamol.
Overall, Peg has been a wonderful treatment for me. It is the only one that can lead to haematological remission. I use EMLA cream - local anaesthetic cream bought over the counter - on the injection site to make it totally pain and dread free (although most people find it painless I do feel a prickle so would rather not feel anything at all!). Good luck! Susana
I am speaking to my consultant soon about possibly starting Peg, and am trying to read up on anything I can get my hands on. Only ever been on aspirin with occasional venesections, but my platelet and white cells are creeping up a little.
What concerns me most, is that at the moment I'm lucky not to have any symptoms from my PV - so although I can see potentially huge benefits in taking interferon, I'm also concerned I'd be feeling worse than I do currently.
There is a Phase 1/2 dosing trial starting soon from Dr. Angela Fleischman on NAC. She thinks it's possible NAC could affect the clone, but this trial does not have that end point, only studying inflammation markers.
Dr Richard Silver, the INF pioneer, said recently that NAC might be helpful with INF, but there is no actual study I know of on that. It was in context of the combo INF/Rux for reducing inflammation in INF intolerant.
Yes, I have been taking a fairly high daily dose of NAC + glycine (5.5 grams + 3.5g, respectively) for the past 12 months. I have not needed a phlebotomy during this time period, which I found surprising. My allelic burden is unchanged and remains at ~16-18%. NAC + glycine has definitely helped with my symptom burden. I no longer have bone pain (sternum) and a recent bone marrow biopsy didn't show any fibrosis (by reticulin). Here is a clinical trial that describes use of NAC + Glycine in 70-80 year old humans. The effects are remarkable. Note, I take half the dose described in this study. onlinelibrary.wiley.com/doi... combination of NAC and Glycine appear to be the most effective approach to boost glutathione, the latter being the most important antioxidant in our cells.
Very high doses of NAC in specific mouse models have shown an increase in tumor formation and it is unclear in how far this is relevant to humans. It is definitely something to keep an eye on.
I am undecided if longterm I should continue taking NAC + Glycine. To my knowledge there are no longterm (multi-year) safety studies for NAC alone or NAC+Glycine.
About 2 months ago I started treatment with PEG-interferon, 45ug ever other week. I will send out an update soon.
Thanks for the detailed reply. I am also a technical person and enjoy details. The link above doesn't work, I'd like to read it. The mouse studies are familiar and most intriguing.
That seems a very high dose of NAC, ~9-10 pills of the regular OTC 500-600 mg bottle. I see you have increased your dosing. Did you find that less was not effective? At 130lbs I tend to react to meds easily, but don't know if that is relevant here. I've had CHR with HU but want off the poison.
No PLB with no cytoreduction. That's great. Could be the NAC/glycine is doing it. But you are now on PEG, still taking the NAC+ correct? That is exactly what I want to do, with Besremi.
The study by Dr. Angela Fleischman plans for only 27 participants to find dosing. This makes the small data we get here significant, if not scientific.
I see you prior post <<I have developed chronic headaches, tinnitis, and a decline in mental function. Extreme difficulty concentrating and making decisions, brain fog, decline in memory, and fatigue. >>
Seems the supplements are helping with that, but you recently said some symptoms are returning maybe from increased PLT.
Your allele is low for PV, I have similar with a vague ET/PV Dx. My Dr calls it "MPN".
There is a drug, Bucillamine, that this study says is 16x more potent than NAC is certain aspects. But it was for IV infusion. Nothing actionable for us.
Here is the paper: pubmed.ncbi.nlm.nih.gov/337... on this publication a person weighing 70kg will take close to 11grams of NAC and 7grams of Glycine per day. Initially I took the same dose and after 7 months reduced the dose by half. The much lower standard doses of 600mg or 1200mg NAC per day don't do much for me.
Still on NAC + Glycine. It may help somewhat with the side effects of PEG. I should mention I also take Niagen, a form of vitamin B3, 600-900mg a day. It helps with my energy level and fatigue.
Thanks for the link. It seems to be a summary, I don't see the numeric details. But I do see info about liver functions. This is something that is normally closely watched when starting PEG. If the supp helps there that alone would be good.
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