I was diagnosed with PV about 11 years ago and have been on Hydroxycarbamide since with venesections from time to time. I have now reached the point where Hydro is not really working anymore in controlling my platelets and my red cells are much too low so my consultant suggested moving on to another treatment. Shame in a way as i had little side effects with Hydro, some fatigue, dizziness at and mouth ulcers at times but nothing really debilatating. She mentioned Jakafi or Interferon. I have looked into both and after reading about weight gain being a very common side effect of Jakafi, I am worried about starting this treatment and was wondering about Interferon? Has anyone got experience of this drug or both?
Thanks
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JHigelin
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Interferons are a great drug if they work for you. Potentially disease altering and some would say as close to a cure as you can get. This is what my Hem said about 4 years ago.
I’ve unfortunately developed an autoimmune problem with Pegasys/Besremi (possibly too many Covid jabs, had 9 so far!) so recently had to switch to Ruxo. However I’ve been on Pegasys since 2018 and it’s been great at reducing my JAK2 from over 80% to c. 15%.
Have you had a recent BMB to check exactly where you are?
Hi PaulThanks for getting back to me. I had a full blood test done on Friday requested by my consultant prior to starting me on Ruxo or Interferon. I have a phone appointment with her on Tuesday so I guess she will discuss the results with me then. How easy did you find having to inject the drug? I'm not good with needles so that's a bit of a worry.
i tried both, I could not tolerate Peg but many can and many do very well on it and for some it can alter the marrow and lower AB. I am on Rux , doing well on it, BMB improved on it and AB allegedly is now 1.08%. Re weight gain, yes it is more easy to put weight on IF you allow it, my experience is it is calorie related, my view is I have to eat less calories probably but what is important is they should be better calories, less or no sugar and refined carbs, instead plenty protein at each meal plus veg and no more complex carbs than you need, instead or in addition more exercise. Another thing I have realised is having ones thyroid optimised makes a difference to burning calories, in my my case especially when on Rux . I am on high dose Rux 22.5+20, my weight is no higher than when I started but only because I eat well (no dieting) and exercise every day.
I was refractory to and intolerant of HU. I responded much better to Besremi. It has been more effective and easier to tolerate. My JAK2 VAF has reduced from 38% to 10%. I also feel better on Besremi than before I started it.
I would also consider Jakafi if my symptom profile indicated it was a better choice. There is recent evidence that Jakafi may also have the benefit of reducing JAK2 VAF.
We are all different in how we respond to these medications. My response does not predict yours. We each need to be clear about our treatment goals and risk tolerance. This is what must drive our treatment decisions. Controlling blood cell counts (reducing risk of thrombosis/hemorrhage) is only one of the potential treatment goals. Other goals include preventing progression into MF/AML, overall survival, and managing MPN-related symptoms that impact quality of life. The patient is the only person who can decide what their treatment priorities should be and what risks they are willing to take to achieve the treatment goals.
It sounds like you are on the right track shifting to Jakafi or Besremi. It is not a black and white decision. The decision rests on your treatment preferences. Note that the decision is not final. You can always try one option then shift if it is not suitable,
My haematologist offered both options and kind of left it to me to decide. She mentioned con's of both but never really went over the benefits so I guess she would be happy for me to go on any. But she made a comment that she liked interferon more and more. I shall ask her why in our next phone call and this might help me to decide. I'd like to know why she didn't like it to start with and why she has changed her mind.
It is great that the hematologist is letting you decide. That is how treatment decisions should be made. Shared decision making leads to better outcomes.
Agree with ainslie. Those are good questions to ask. Understanding the differences in benefits as well as risks is critical in making the decision.
Attitudes about the use of the pegylated interferons are changing. With Besremi now on the market, there is emerging evidence for the viability of the pegylated interferons, particularly in terms of disease modification and tolerance. I would expect the same thing may happen with Jakafi. In many healthcare systems doctors are under pressure to start with hydroxyurea because it is so much cheaper. Besremi and Jakafi are much more expensive. HU is also the drug most doctors are more familiar with. Familiarity breeds liking even when newer drugs may be a better choice. Perhaps your hematologist has an emerging view of MPN treatments. That would be a good thing.
Please do let us know what you learn and what you decide.
hello, I was in same position last year I had to switch to ruxolitinib as hydroxy was no longer working for me.
Prior to hydroxy I was on interferon.
Interferon didn’t work for me it didn’t control my bloods very well and made me very unwell. The side effects in my case were awful, I constantly had flu like symptoms on it and developed severe headaches. I also lost all my hair as I developed drug induced alopecia with it, however some people get along very well with this drug and it works well for them and they don’t have as many side effects. They stopped it as it was making me so unwell but wasn’t controlling my bloods.
I’ve been on ruxolitinib for over a year now - it’s been the first drug where I’ve had no side effects as again I suffered a lot of issues on hydroxy .
It has taken a long time to control my bloods (they stopped the hydroxy suddenly without tapering it , when I started my rux which in hindsight I think was a mistake as my bloods rebounded completely so it took a long time for them to get them under control completely ) but now it’s under control - I feel much better and it’s the first drug that’s controlled my MPN symptoms as well as my counts without side effects.
I did gain some weight yes - my understanding why this happens and my experience with it as it blocks the receptors in the brain that stop hunger - so you feel a lot more hungry all the time.
However I’ve lost all the weight I gained now by now making sure I stay in a calorie deficit and exercise more. However it’s mainly just making sure you be careful not to over eat when you feel hungry and if this is something you can be mindful of you shouldn’t gain weight , as this was the only reason I gained it as I ate a lot when I was always hungry.
And as someone else said already the dose makes no difference I gained the weight when I was on a lower dose . I’m now on highest dose of 25mg twice a day and still haven’t gained any back after I lost it . You just have to be careful to not over eat and try eat less refined carbs/sugar etc and eat well as best as you can.
I think whatever drug you decide, always know if it doesn’t work for you , you can ask to switch to see if the other works better etc .
Aah I see ! That’s interesting I guess all these meds work in so many different ways for different people.
When I started to gain weight this is info I was told by my MPN Specialists : Ruxolitinib can cause weight gain primarily by interfering with the body's leptin signaling pathway in the brain, which is responsible for regulating appetite and satiety, essentially making the body feel less full after eating, leading to increased food intake and potential weight gain; this disruption occurs due to ruxolitinib's action on the JAK2/STAT3 signaling pathway in the hypothalamus.
I feel that happened to me to cause my weight gain as when I ignored the hunger to loose the weight it made me loose the weight and I’ve kept it off . Intermittent fasting has really helped me as well as I then have a shorter window of eating etc and has kept me disciplined and has really helped But I know everyone has a difference response to the meds /side effects but hopefully now I know what to look out for the weight can stay off as otherwise I’ve done really well on this drug with no other side effects
Peg has been excellent. Injection is easy I travel with it & no problem. Use an ice pack or cubes to numb area & pinch skin on side of lower stomach. I never feel it. I was on Hydroxy beforehand & changed . No side effects as I am on a low monthly dose. However we are all different but worth trying . 👌
No problem with mood or depression . By the time you read all the side effects you would go off everything however I discussed my treatment with MPN & we started on low dose 45 monthly . It has controlled all my levels & no side effects for me.
I tend not to read the long list of sode effects that comes with drugs as I know pharmaceutical companies have got to list them to cover their back side. It's just the my consultant mentioned weight gain with Jakafi and flu like symptoms and mood changes with Interferons. I assumed these would be the most common ones. I initially thought Jakafi as I'm a teacher and need to keep my cool with challenging kids but after having read people's experiences on this forum and Blood Cancer UK, I haven't come across many people who have experienced mood changes. It also looks like there is more evidence of Interferons slowing down disease progression and have around for longer so more data available.
Yes I am also very busy helping disabled sailing on tall ships trips. Fully retired from work now . Peg Interferon is what I needed as very active & no time to remember tablets when I am flying or travel the injection was a game changer for me. I also wanted the choice as my MPN meetings I attended explained Interferon could almost reverse our complaint. In the 2 years on it I feel well & healthy on it. Hydroxy was horrendous for me I was so exhausted & ill on it from a few days after taking it. Hence I contacted Professor Harrison at Guys in London for advice & came off it . I had to adjust doseage of Peg as I started on weekly which was far too strong & I felt heady. Reduced to monthly & perfect then. Good luck I am sure this shortage will be ok soon .
You're right on many sides, they are usually not severe, are addressable and usually reversible so it's usually not a big concern. And reading all of those printed on that flimsy paper is often not practical. But there are some basic ones for our regular meds that many forum members discuss, and these do warrant close attention.
The most extreme example is IFN's a black box warning for sides that are both severe and potentially irreversible. This include mental health and autoimmune conditions. (see my reply with image in this thread.) This is there because these have occurred with the medicine and we do see it with regularity if infrequently on this forum.
You can see my posts why I don't want others to follow my IFN experience. So the labels are worth attention to know what to watch for and act on when indicated.
An example with Rux, I check regularly for any skin abnormalities, as this is on the label and does happen here. Usually, not always, it's addressable while continuing therapy. In hindsight I should have paid better attn to my vague warnings on IFN.
Last thing. Have you had any issues with drug shortage? That's something I have read about Pegasys. Maybe there's no point for me to start this treatment if I can't access the drug. But then again if my consultant mentioned it, she must know she can supply it.
Yes there is a global shortage of Pegasus interferon, but not of Besremi (also interferon, the newer one) so if your haematologist is suggesting the latter, supply issues aren't an issue. Besremi is not yet approved here in Canada so supply is an issue here for those of us on Peg interferon.
It's hard to reassure a newbie about self injecting. I hated the thought of it and really didn't want to go on Peg because of the need to master the art. I would tell my v nervous former self - it honestly does not hurt injecting into fat - you can't feel it. Also be patient learning and 'look how good you are at it, now'. I wanted interferon over Jakafi and I'm so glad I got over my fear of injecting.
I encourage you to choose the drug you want and back yourself to become a master needle ninja if you want to use interferon.
Lastly, I had negative side effects on Peg interferon when they upped my dose to alternating 135 / 90 weekly. I KNEW I was on too high a dose but it took a bit to convince my doc. I recommend starting low and building dose.
Yes there are problems. I am only one monthly & struggled to get that on time. It is supposed to be sorted by June time once new pharmaceutical company sort manufacture . Besremi was offered but I am sticking to this one whilst I can get my monthly one. I expect it depends on the frequency they suggest for you. I could not cope with weekly so monthly is perfect for my body . On that dose I have no tiredness & very active 👌
Similar to others on here i've had both Interferon and am currently new to Jakafi, whilst i tried interferon for circa 7 months and whilst i tolerated the drug and didn't have any major side effects it didn't control HCT and i still had a number of headaches of a type associated with my PV experience. I've now been on Jackafi for 3 months and have to say ( for me) its made a massive difference. I've been on 25mg am & pm for the last month and my Platelets have come way into line at 300 or so and HCT is under target for the first time in a year. to the point now where i'm decreasing my does to 20mg Am & 20mg Pm , as well as the Blood's reacting well to the drug i've seen my overall symptom burden decrease, less tingling less ,occular headaches and for me a real win the itching following a bath or shower has stopped almost totally.
I never had an issue with the Injections weekly but overtime it is an additional "hassle" to normal life, travel considerations, keeping things cool, airport security etc etc
With Jackafi its a couple or 3 tablets twice a day with water first thing in the morning and again around 7pm.
I was / am slightly worried about weight gain ( I hover around 80kg and am 5ft 10) but for me that's the lesser of two evils compared to the possible mood altering of interferon (which I also didn't experience but was concerned about more than anything)
That’s interesting you were on 25mgBID , for PV quite a high /max dose, did they start you on that dose, usual start dose is 10mg BID but 60% need more, I am on 22.5+20
Hey, Ainslie. Started on 10mg for 2 weeks first then went to 15mg for the next 2 weeks with blood tests every 2 weeks as well then they jumped me up to 20mg for a month. Mainly because HCT still wouldn't shift. i was at 0.49- So had a Venesetion, that dropped me to 0.48 so they upped me to 25mg. and have been on that for a further month. Was blood tested on Thursday and I'm now at 0.41. So my consultant has dropped me back to 20mg for now with a view to dropping bit by bit until they find a balance. To your point i was nervous as once i was up at 25mg if that didn't start to budge HCT I didn't have anywhere to go...i have been struggling with venesections and became severely iron depleted hence the change of course to interferons and Jackafi.
I think maybe your doc was a bit gung ho with upping the doses at only 2 weeks, when I started Rux Dr V who was Dr Rux at the time said start at 10Mg BID then after a month go up 5mg BID if counts are not coming in to line and so on ie increase by 5mg BID per month until controlled. In my case I would say my counts take longer than a month to show any change if I change the dose. But , you seem to be getting there which is the important bit
I have been on Besremi for 2 years and has been wonderful. It did tip the scales and give me official hypothyroidism but I was always kind of there anyways. So on treatment for that. But I feel great and have felt great on it. Changed my life for the better!!! Going this week to see future plans of either staying 175mcg every other week or consider once a month dosing. Been a positive life changer for me! And I work out 6 days a week and I reduced eating meat at lunch during the work week, eat more fruits and salads. But Besremi has helped me feel well enough that recently I even started running again. Been 6 years since I ran. I have been biking, yoga, lifting but recently added to my peloton collection and got the treadmill. This has helped reduce cholesterol, weight and glucose. Good luck! Both choices are good.
I have been on Besremi for 10 months numbers are great and I actually have lost weight but I am very careful since diagnosis to eat clean and healthy. Good luck!
I was diagnosed with PV in 2015. After a couple of years on phlebotomy alone, I started HU at 500 mg/day. It worked well for a while, bu eventually lost effectiveness, so the dose was raised to 1000 mg/day. I then developed ulcers on the backs of my hands and yellowed and thickened nails. At that time (Aug 2022), my MPN specialist recommended that I try Jakafi. I started at 10 mg twice a day but became anemic. Dose was lowered to 10 mg/day, and now I'm taking 10 mg am and 5 mg pm. My blood work has been quite stable with Jakafi. I haven't really gained weight. Jakafi did exac erbate my IBS, but I've been taking Linzess for that, which works rather well. All in all, Jakafi/Rux has been a good choice for me.
I've been on all three of these drugs. All controlled my blood counts well. I felt not so good on HU, malaise on IFN til it blew up, and Rux has been ok.
I have also gained weight on Rux, with my diet entirely the same and no change in hunger in my case. I had a weight deficit, so it was ok, but now I have cut my food about 10% and it's holding ok after just under 2 years of Rux.
IFN is quite good medicine and for most pts IFN is a good experience and sides are common but manageable. If your Dr pushes you to aggressive dosing you might want a 2nd opinion.
But IFN is unique among our drugs, for an unlucky few it can have sudden and severe sides. This earned it an FDA black box warning, reserved for the most severe risks, see this image I've posted before. These risks are real and are happening on the forum. I am an extreme example of this black box. IFN pts should watch carefully for any of these, autoimmune being a top concern. If you watch your dose and any concerning sides closely it should be fine.
Rux has plenty of sides, two prominent ones are non-melanoma skin cancer and Shingles. If you're already at increased risk for skin cancer this is a consideration. You should request the Shingles vaccine, this is recommended generally for everyone, but before starting Rux is a specific good idea.
Both IFN and Rux can reduce the Jak2 mutation, while HU does not over the long term.
What do actual doctors, or their family members or other rich people do when confronted with an interferon or Jakafi decision? Over the past 10 years it's been my observation they will not hesitate to take low doses of both drugs together to gain the benefits of both with reduced overall side effects because the doses are low.
Since I am not rich and can only afford one of these drugs I chose interferon as it has a 30+ year long track record of giving patients the best chance of slowing or halting disease progression. However, if I had a large, painful spleen and severe itching I would probably take Jakafi first for several months before switching to interferon.
Hi, I've tried interferon, I found injections fine and a little nausea for a few days after the injection, but this reduced after a while. Unfortunately, it was going to take too long to shrink my spleen (20cm) and reduce my VAF (80%) so I eventually moved to Rux. No side effects except appetite/calorie related weight gain. I regained a lot of energy, reduced brain fog almost completely, zero itching. Importantly, within 3/4 months my spleen went down to 16cm and VAF is 63%.. I expect the figures have improved again since, they'll be checked later in the year. Hopefully it will continue to work for a long time 🤞
Glad to hear it's working for you. Fingers crossed. I don't have an enlarged spleen. I have to switch to something else as HU not working anymore to control platelets which are going through the roof again while at the same time haematocryt very low as well as white cells. I have become anemic feeling totally drained, lots of dizzy spells, brain fog and breathless. I've taken iron tablets for 2 weeks and more than halved my HU and my energy has come back but my platelets will have no doubts increased further.
How long were you on IFN? Rux is well known for spleen reduction, great it's working so well
I see years ago you had tingling, while the Rux has helped with that. All that new energy might help with the extra appetite.
Seems you got no VAF reduction on IFN but did quickly on Rux. I don't think there are studies with that result, but it's strong additional evidence of Rux's ability to reduce the mutation.
Did IFN control your counts some?
Anyway it's good to feel good, wishing you lots more of that.
I was only on IFN for a few months, but with the nausea, it was taking a long time to get to a useful dose. Rux was always expected to get a swift result, both with my spleen and VAF. I'm super pleased both have improved.😊
Oh dear, it sounds like you are suffering at the moment, I'm sorry to hear that . In the UK, I don't think you qualify for Jakavi without an enlarged spleen, I maybe wrong. I know of lots of people that do very well on the interferons, it's probably something I should have done many years ago, but it wasn't an option at the time. Who knows, perhaps my spleen wouldn't have become so enlarged. As Hunter said, there is mounting evidence around interferon. 👍
Some updates after speaking to my consultant today. My platelets are up a bit to 700 but my haematocryt and white cells are back up to normal levels so I'm sticking a bit longer to HU increasing it slightly. I'll speak to her again in about 6 weeks time to decide the way forward.She's still offering all 3 treatments for me at the moment as I don't have an enlarged spleen nor any itching pbs and don't have too many side effects on HU.
She's going to investigate whether I can be started on Interferon due to current shortage.
Interestingly she said that there are signs that HU can also lead to Jak2 reduction. There are no clear links between lower AB and stopping disease progression.
So I've got a few more weeks before making final decision and I'll keep a close look at to what others are saying but thanks to all of you who have contributed.
The best known info on HU for allele reduction is this plot, familiar to regulars here, where HU was directly compared to IFN. It as the 5 year trial for Bes. HU provided rapid reduction but for a limited duration. I recall over the longer term it was ~1% of HU pts with sustained reductions.
There is now recent evidence, via two trials for Rux, that lowering allele from therapy is strongly correlated to better outcomes.
The recent Majic PV trial found this correlation, Fig. 3 of:
But whether a lower static AB, rather than lowering it, relates to better outcomes is harder to find. Your Dr's wording seems to be regarding relatively low static state.
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