I have been given an option of taking this instead of Pegasys interferon . However I have been advised of the side effects of it and wondered what other people’s experience of it is. After 27 years of having ET and me taking hydroxyeurea it stopped working 4 years ago and then I had a 6 month stint of Anegralide- which wasn’t good- I ended up with a heart attack. After that I was put on Pegasus Interferon but I get terrible bone pain and lethargy. It’s only a consideration at the moment . Advice would be really welcome please. Sorry I forgot to advise that my ET diagnosis has recently progressed to PV. My consultant offered me the choice of staying on Pegasus Interferon or moving to Ruxonitlib . Apparently skin cancer and the formation of other cancers is more prevalent with Ruxonitlib- as well as weight gain? Any one got experience of this? I do guess that everyone is different and reacts differently to the drugs- I only have to think about Anegralide - it’s a complete no no for me but others seem happy on it! Likewise Hydra tablets - 24 years taking them with no problem- but others do have real issues! Sadly they just stopped working for me! .
Ruxinitlib: I have been given an option of taking... - MPN Voice
Ruxinitlib
Rux isn’t often prescribed for ET yet, on the side effects most don’t get any, I don’t have any, I am on high dose for PV for 7 years, works wonderfully, weight gain is a possibility if you let it, 6% allegedly get shingles but the Shingrix vaccine is excellent at preventing it.
I have been on Jakafi for 5 months after switching from Besremi for my PV. Side effect are much less than Besremi - weight gain being the only significant one at 8lbs over the first 3 mts. I am doing the 16:8 fast to try control this.
Best of luck!
Interesting. Did your insurance pick up the price of Jakafi? Why did your doctor suggest making the change?
Insurance covering all of Jakafi cost as they did for besremi. We changed because I had been on 500 dose as my platelets crashed. I took a one month break and started at 150 again but even going back to 250 could not control my red call count. Over the 18 months I had a lot of AEs - headache tiredness, joint pain. These all disappeared once I started on Jakafi. I am now taking g 15 mg twice daily as 10 mg dose was not keeping red cell down. Hopefully this higher dose will
Interesting that you got all the way to 500 mcg on Besremi. Thats the dose I’m on but it typically takes time to get that high. How long were you on it before you changed? How long have you been on Jakafi? My RBC count has been coming down slowly, but it is still high and HCT has not been controlled. Phlebotomy need every 76 days on avg.
A total of 18 months with the high dose for about 10 months of that. Been on Jakafi for 5 months. Only increased dose in last month from 10 to 15
This has been the evolution of my RBC...it appears to be having an impact....maybe...
You saw no impact to your RBC at all? How about now on Jakafi? I started Besremi in May 2023. But I'm 15 months in already...I am tracking this closely to see if it ultimately leads to improvement in HCT control. If you have the data for your RBC did it improve at all? My doctor was telling me that mine wasn't improving, but that isn't right (as you can see in the graph above). It's still not great, and not within normal range, but the next 6 month could be informative.
Anyway, my real point is that sometimes the RBC improvement is very gradual and slow and the improvement may not be that noticeable unless you really graph it, especially given the volatility. If you have your data, and aren't able to graph it, I'd be happy to do it for you.
So Besremi did control my hematocrit. After increasing to the 500 ug dose in Jan 23 I had phlebotomies in Feb and March, but did not need another one. However in Nov 23 I had the v low platelets so had to stop besremi. I was restarted at 100 ug late Nov hematocrit went up to 48 by January 24 so had to have another phlebotomy. I increased to 200 ug but by March hematocrit was up to 49 and my side effects were bad. So we decided to try Jakafi. I think could get a dose that would have worked but the AEs to me were unacceptable
Looking at RBC. Levels while on besremi and now Jakafi have always been in range i.e. 4.5 - 5.9. My oncologist has not used this however re criterion of importance. It has always been hematocrit being less than 44
Okay, that makes sense. Yeah, HCT is always what is used, but the RBC is related, so if RBC is changing, that might suggest HCT may change. Good luck on the Jakofi. Definitely interested to hear how it goes-
I assume you're qualified for the Rux because of your new PV Dx. One of the "benefits" of PV vs ET is access to more treatments.
I've been on HU, IFN, and Rux. On PEG, did you try a lowest possible dose? meaning the smallest dose that keeps your counts just acceptable. If not you could discuss that approach with your Dr. My error was taking more than that.
On Rux, skin cancer risk is real, more so for those who are at higher general risk for it (fair skinned, history of any, etc) Usually it is of the less serious sort, very rarely it can be more serious types. So standard precautions are suggested. Weight gain is common, including without change in appetite or eating habits, based on discussions here. I solved it by eating a bit less of the all the same diet. Shingles is another Rux risk, getting the Shingles vax is advised (for non Rux pts too)
I have increased hair with Rux, no more of it falling in the shower drain. Rux is known to affect (benefit) this subject in some conditions.
All our meds have risks, including some rare bad worst case effects.
that is very helpful- thankyou- this group is fabulous!
I will add that it’s unclear if the skin cancer risk is because of Rux or because most people on Rux are on it because previous Hydroxy , I have skin checked every 6 months and so far it’s perfect despite 10 years of daily UVB for itch, I havnt been on Hydroxy though.
If I were in your shoes my biggest fear would be future disease progression to secondary myelofibrosis at between 70-80 years of age because that's when most patients are considered ineligible for a stem cell transplant. Interferon offers MPN patients the best chance of slowing or halting disease progression, but it's true you might have less lethargy and bone pain on ruxolitinib
In the USA, but not the U.K., some doctors are willing to prescribe combo therapy; i.e. low dose Pegasys + low dose ruxolitinib so patients can gain the benefits of both drugs simultaneously with often minimal side effects.
Yes, I am on this combo and the result is great
Are you living on the UK as I am?
No, I am living in Indonesia but the treatment at Kyala Lumpur
Unfortunately many of the insurance companies haven’t yet approved Jakofi for PV without meaningful progression-
I think you may be in the Stayes? I am in Uk and my consultant suggested I could move to it but not sure if I will - or not? I may give it a bit longer!
Yeah I am about 3 months away, possibly 6 months from trying the combo Interfurion and Jakafi. My concern is I have heard insurance here in the states isn’t so favorable without disease progression. I am about 15 months into starting Besremi and have not yet control HCT.
I've been on ruxolitinib since 2019 with no side effects. However my PV has progressed to MF so I'm now on a slightly higher dose. 15mg twice a day. My last blood test was the best in years apart from low platelets. White count now down to 24. I do feel my dose should have been increased sooner though.You've tried a number of different meds so go for it. Let us know if you decide to take it and then let us know how you get on with it.
Carol
Hi
I’m on Rux (Mithridate trial) after some years on Hydroxy. For the first time in twelve or so years all those pesky red flags on my FBC disappeared. Bar one, my platelets! They were finally under control on Hydroxy but we’ve still to tame them on Rux.
I’m not sure I ‘feel’ much different on the Rux. Maybe less tired. Hard to tell about the weight. I probably aim to eat less. Rux is supposed to interfere with the signals that tell you you’re full up so best to be alert to that.
Having already been on Hydroxy, the risk of skin cancer is more significant but I’m also already alert to this. I’ve been covering up, putting sunscreen on and wearing a hat ever since I went on the Hydroxy. On the upside, everyone comments on my ‘great skin’ now. Every cloud has its silver lining!
I've been on Rux for about 3 months now, plus Acyclovir. I've also had my Shingrix jab, as a precaution. I'm now secondary MF, having progressed from ET. Like you, I was on Pegasys before, but suffered badly with exhaustion, aches and pains etc. Since the MF diagnosis I've been on Rux and the improvement in my general health is amazing -back to my old levels of energy, no muscle pain etc. Yes, there's an increased risk of skin cancers, and I've had a squamous cell carcinoma (now cleared) but you do have to protect yourself from the sun.
I was diagnosed with PV back in 2015, then aged 71. I was on hydroxyurea for about five years, but I got skin ulcers and in any case it wasn't doing much for my PV symptoms. I switched to Rux two years ago: there was some initial anemia, but once we found the right dose for me (10 mg once a day), all has gone well. I haven't really seen any weight gain, and no skin cancers so far. Recently I observed some symptoms (mild night sweats, weight loss) that caused my MPN specialist to suggest going to 15 mg/day (10 am, 5 pm). This has worked very well for me so far.
thanks for that - very encouraging! Hope you stay on course! 🙏🏻
Hi, I am on Rux and it works super fast and I'm symptom free. Rux is no different to HU in that you need full sun protection or other cancer risks as I understand it. As far as I'm concerned, it has given me my life back, and I wear factor 50, which is what I did on hydroxy. 👍
57 year old PV patient. just switched from Besremi to Rux three weeks ago after three years of besremi failing to control hct even at the max dose. I tolerated besremi well even at max dose for the final year but it would not control hct which is my mpn docs primary concern. We were both aware that interferon takes a while to kick in and gave it a good go but it was time to try rux. Also my spleen was starting to get slightly larger which was another reason to switch. Been on rux for three weeks. Itching subsided almost immediately. No side note effects so far and feel good. Have not had labs yet since starting rux so fingers crossed for hct control. Will probably take a while to see on hct control but am curious to see how my labs respond to rux versus three years of besremi. Insurance covered the rux but almost certainly would not cover combo therapy even if prescribed which it was not. Best of luck on your journey!
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