I’m looking for some advice, I need to decide which treatment course to take, I have PV with early MF, a history of clotting and very high allele burden. I also have portal hypertension which is being managed separately. My spleen is enlarged but it’s thought that is mainly due to the portal hypertension.
Except from fatigue I don’t really have many symptoms, I do suffer from migraines but usually only when stressed. My bloods are within normal limits and I’m 41.
It’s been suggested that I start on rux as that might improve my quality of life (I also have purities), I am aware that in some cases interferon can even reverse bone marrow fibrosis if it’s used early on so I can’t help thinking that I should give this a go.
I am aware that the side effects to interferon can be hard to manage and I am wondering how debilitating they are, do they settle down after a period of time? If so is it weeks or months?
The specialist said I will have a better quality of life on rux and that although interferon has in some cases reduced fibrosis it doesn’t mean it will for me and that the side effects can be difficult to tolerate.
Many thanks in advance for any advice or shared experiences I’m just finding it difficult to make this decision.
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DarcyShepp
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it’s a tricky one, one simple answer is you could try Interferon and if it doesn’t work or agree with you then you could switch to Rux. Rux is generally faster at reducing spleen and sorting itching, it tends to have few or no side effects, interferon can increase itch temporarily or not temporarily. Interferon has been tracked for longer hence more data on it slowing or maybe stopping change in the marrow for a subset assuming they can tolerate it. Rux is newer on the block so less data re modifying disease. It appears that again for a subset it can reduce AB and make change in the marrow, I have PV and on Rux , BMB from 2023 was better than one from 2017, they reckoned that was due to the “treatment “ effect of Rux and not necessarily deep molecular change. Some have lost mutations on Rux.
The other option if you have a doc who agrees is the combo of both drugs, the Rux would then hopefully sort the itch and spleen, there are papers out there on the combo, some by Hasselbach although there may be others. I will add that I asked my expert at Mount Sinai about combo treatment and his answer was no point in adding Peg to my Rux because the both do the same thing albeit in different ways, that was just his opinion though and not necessarily mine.
Great to hear your bone marrow biopsy result improved on rux, I didn’t know that was a possibility. Interesting to hear about the potential of increased itch, that is not appealing!
I did mention the combo drugs to my specialist but it was a flat out no unfortunately.
Thank you again for your comments they are so helpful!
Our response to medications varies by individual. As our friend ainslie suggests, you can always try a medication and see how your respond.
The interferons can do a good job with meeting hematologic targets and have been shown to potentially reduce allele burden. There can be side effects but they are often manageable . In my case, the interferons have been more effective and much easier to tolerate than hydroxyurea or venesections. Note that one of the side effects I experience is itching and occasional rashes. There are well controlled by a daily dose of cetirizine (antihistamine) .
While I have not used ruxolitinib, I would certainly be willing to if my PV symptoms included pruritis or splenomegaly. RUX has proven efficacy for these symptoms. RUX also appears to have the ability to reduce allele burden. While it can have side effects, all of the medications we use for MPNs have risks. The only way to know is to try.
It would be very reasonable to try either IFN or RUX. Suggest that you decide on your specific treatment goals and risk tolerance, then do a side by side comparison of your choices to see which aligns the best to determine your treatment preference,
Please do let us know what you decide and how you get on.
Hi Darcy, wishing you well on your treatment decisions. My newbie experience has been positive with Pegasus after taking 45 mcg weekly for 8 months. Very mild side effects and blood levels got to normal within a couple months. My health labels are PV, thrombosis history, high AB and age 54. Itching is same or better, never been severe for me. A day of fatigue or mild cold symptoms is the extent of my side effects. All in all I feel better than I did before diagnosis and starting treatment. I’m vigilant to catch any mood or autoimmune changes early, good to know there are multiple options, and the sharing on this forum is a gift! Thanks to all who contribute.
Are you in the USA or U.K.? If in the USA a leading MPN treatment center is the Silver MPN Center in New York City. The specialists there view interferon favorably because they have 36 years experience successfully treating hundreds of MPN patients. crt.org/wp-content/uploads/...
For rather aggressive cases of PV like yours may be (very high allele burden and enlarged spleen) they are also open to prescribing the combination of Pegasys interferon and Rux.
Here's a one minute video clip by one of the Silver Center specialists that shows how focused their doctors are at slowing or stopping disease progression in younger patients such as yourself: youtu.be/s9euOVQGhks
I found out I had MF when I was 50 and now 76 I am sure it was the hip replacement that caused it which I found out a year later. Any way I was on Interferon injections for eighteen months and then was taken off them to see how I would go then my platelets would start rising up again so went on Hydroxy for a long time then two years ago my platelets were dropping so I was taken of Hydroxy and tool nothing for a while then I started getting Anemia not I take Jakarvi and make sure my iron is acceptable its not good but am able to get by.
I'm 44 and have post ET MF. I was on interferon for my ET and my disease still progressed to MF. Before I was diagnosed with MF I was taking interferon and still suffering with migraines, pruritis and splenomegaly. The Rux helped with all these symptoms, but I feel that the Rux also increased my level of fatigue.
I'm only speaking from my experience with ET and have very little understanding of PV.
With the guidance of your doctor, the only way to know is to try it.
Not sure what side effects you refer to . IF it’s the lengthy list on drugs manufacturers list do not worry. I have had no side effects on Interferon. But having read leaflet on side effects before I started it was a daunting list ……..However great management by my MPN
. Initially a 45 weekly dose caused me light headed. Reduced to monthly I have had no side effects on 2 years of use & has been excellent in control of ET.
We are all made different. However the current problem is getting the drug as allegedly in short supply. I struggled to obtain mine on last prescription a few days ago .
Hi Darcy. I have PV and was on Besremi for 18 months before switching to Jakafi due to the unacceptable side effects. I reiterate what has been said above - we each respond differently to these drugs and the good news is that both have been shown to be effective.
I would suggest you start on either and keep a daily log re how you are doing/feeling. This helped me make the decision with my oncologist to switch
It is really what you feel comfortable with doing. I started interferon last year, titrated up in dosage a little fast and had some miserable side effects. Now at a lower dosage I tolerate it well. I also added a small dose of rux for itching and that, along with interferon, is working very well. Just start " slow and low". Best of luck!
Best of luck with this decision. Like many have said, everyone is different. I’m going to share a link here to my post after being on Besremi for two years. The interferons have the potential of lots of side effects, but many have few issues with them. I’d put myself in that group. The only persistent side effect I have after two years is periodic rashes/dry skin patches. And it’s reduced my allele burden by a lot. More here: healthunlocked.com/mpnvoice...
hi Darcy, we’re all so very different and I don t want to muddle you.
I m 70 had PV for 15 years on hu for 15 years with no side effects. .
Had to change drugs as eventually caused actinic ketosis ( that’s gone) was then on 45mgs interferon then 90mgs weekly. Had a dreadful reaction. I gave it a good go for 3 months then couldn’t stand it any longer! Depression, flu, dizziness, nausea plus more.
BUT I know 4 people who have had no reaction at all to interferon.
Now on Rux which touch wood - seems fine. I still have fatigue though. Par for the course.
As everyone says all you can do is try it.
However my advice would be to discuss in depth with your haemo and then make your own decision. Don’t be swayed against your gut instinct.
Hi everyoneDiagnosed with ET in Feb 24 and started on Peg 45mcg weekly, currently every 10 days. Responded well with main side effects almost gone just fatigue remains for a few days after.
Just been to collect the next set of doses and was told there are none available in the world let alone UK. I am in Kent, UK. So they have 10 days to arrive at an alternative.
Hopefully Rux as an alternative isn't in short supply 🙏
I had severe itching. I took HU and antihistamines around the clock, did light therapy 2-3 times a week, and still I itched. I got on Jakafi (rux) because of the itch, and it changed my life (for the better). The only negative is the price in the US, and the decrease in immunity from the drug. I also have had anemia. But I can't do interferon for fear of it bringing on depression. I am so glad to be on Jakafi.
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