After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep 2022) to 500 ug Bes and was at that dose for 9 months. I was CHR for the last 5 months of this period. My platelet count however crashed in Oct 2023. I took a break from Bes for one treatment period and then restarted at 100 ug. The platelets recovered quickly as expected but my Hct started to increase. After 2 months, I needed a phlebotomy and dose was increased to 150 ug. After another month the HCT continued to increase and I upped the dose to 200 ug - this has been my dose for the last month. My HCT continues to increase and I will have a phlebotomy again tomorrow. In addition to the lack of efficacy, the side effects of Bes have been significant. Principal has been the emotional toll - anxiety, irritability and impatience. These track especially when the dose was either changed or temporarily halted. I also had uncomfortable facial flushing daily and frequent headaches - the severity of each was reduced after the dose was dropped from 500 ug to 100--200 ug but still occur. Lastly has been the skin itch. Zyrtec (thanks Hunter!) definitely helped reduce this. Taking all into account, my oncologist felt that it would be best to switch to Rux and see if that is effective and tolerable. Day 1 is today. While it is twice daily oral dose, it simplifies travel plans as it does not require refrigeration as Bes. Will keep you informed of my progress
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gjh8733
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Sorry to hear that the Besremi is not working for you. We are fortunate that we now have more options than we used to have. Wishing you success with ruxolitinib.
I made the same switch, after having an ultimate side effect.
I complained to my MPN Dr in jest that Rux is boring. His reply was "should we add some side effects?". It has various of its own of course but I have not experienced them so far.
The old Jefferson airplane song comes to mind "..the ones that mother gives you don't do anything at all..." It has been quietly dong its thing well for me.
I am on 10 mg BID. Will check monthly for Hct and metabolic profile as see from USPI that it can impact lipid profile. Any thoughts on what else to monitor re potential AEs gratefully appreciated.
Best get Shingrix vaccine, weight can increase but controllable if eating some less calories but also better calories, ie avoid sugar and refined carbs, plenty protein and veg and just enough good quality carbs, and if poss exercise
That is a standard PV dose, 20mg/day. The label has a long list of AEs as do most of our meds. From the impression on this forum, worst case tends to be non-melanoma skin cancers, while melanoma is also possible per a recent report. Regular dermatology checks are indicated, esp for those with higher risk. HU shares this category of risk, and may contribute to it for those with HU history.
Weight gain is very common, for me that is a feature not a bug. Thicker hair is also a possible side effect, I have had this. But that is not really an AE.
If you're done with the full shingles series that will be good as anslie says.
Thank you for sharing your journey. I appreciate being able to learn from your experience. Wishing you treatment success with no troublesome side effects with Rux.
"Oncologists" are typically not very experienced with interferon or are only semi-familiar with just the Besremi brand so are prone to making dosing mistakes, causing patients to give up on all brands of interferon and switch to the "feel good" drug Jakafi. The problem with Jakafi is it doesn't thwart disease progression as well.
Inhibiting progression is especially important for 60-something year olds because if they progress to myelofibrosis while in their 70's they will usually be considered too old to qualify for a potentially life saving stem cell transplant.
MPN specialists like the one below who are experienced with the Pegasys brand of interferon report alot of their patients feel good on it. They are also open to prescribing, if necessary, a low dose of the Pegasys brand of interferon in combination with a low dose of Jakafi so patients can gain the benefits of both drugs: youtu.be/OsdoYoA1kLQ
Thanks for your response. Recent study results for Rux are showing a reduction in mutant cell burden so appears to be impacting disease progression like Besremi
pity Bes was not successful for you, good luck with Rux, you will probably find it a breeze by comparison, I am on high dose for PV and no probs 6 years on , I lasted 3 weeks on Peg
Have you seen any drop in your mutant cell count % since you have been on Rux. I recall that it has shown decreases similar to Besremi although data still very preliminary
The Incyte company is aware of recent studies, but as far as I know, still does not promote Rux as having disease modifying capabilities and doesn't seem to be pursuing clinical trials to try and get it approved in the USA as a first line treatment for PV.
none of the meds we take is allowed to claim disease modification as studies used for FDA approvals did not measure this. Likewise for VAF reductions. The doesn't mean we and our Drs can't foresee these benefits for IFN and Rux based on studies that we have posted on.
On any further clinical studies for Rux, in its current formulation Incyte has no incentive to do any, their patent expires in ~4 years late 2028.
They have been trialing an extended release Rux form at once per day. FDA rejected it last year (peak levels not high enough) but they do have incentive to keep at it, as this will be a fresher patent.
Rux VAF reductions in the study are not to the extent of those seen in most IFN studies, although still impressive. The best reductions were seen with lower starting VAF (~60% max I recall) Rux studies have been handicapped by selecting only pts who are intolerant/resistant to HU. With a study population similar to that used in the IFN studies the results very likely would be closer to that seen with IFN (but there is no long term data to confirm this) So the result in the post above might be considered a minimum result. The implications of this HU aspect is discussed in detail in other posts.
You are known on the forum for your view of Rux. However this particular reply crosses a line.
1: OP gjh8733 with his Dr have made a medical decision, and he is sharing that with us. We owe him rational and kind replies.
2: Our dear MF members don't need the constant reminders of the complications of the condition. (Fortunately there are new Jaki's for Rux resistance)
3: The results for MF have no bearing on its use in PV. See sample reference and thread below that you know well, supporting OPs decision.
4: IFN of either sort is a great if imperfect med. But we are seeing regularly here that my Dr's opinion applies "IFN is tough medicine". Your implication that everyone should consider no other treatment is not rational on the facts.
5. You have seen my carefully formed replies and those of others (thanks to ainslie, Manouche et al) and can know well the current state of knowledge supporting the option of long term Rux in PV for gjh8733 and the rest of us.
6. I asked you before to not make these sort of posts. A positive message is possible and accurate.
7: In this context your reply here is one or all of uninformative, unsupportive, and harmful.
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Sample report and one of many relevant threads for some context:
"Until now, complete molecular remission in PV pts has been described only in patients treated with interferon. Our data suggest that a subset of pts who present a rapid and sustained reduction of the JAK2V617F allele burden under ruxolitinib may eventually reach a condition of CMR with prolonged treatment." . In fact I noted in the thread that I recalled this subset is similar to that for IFN.
And pleasantly also potential for disease modification with Rux. In the post I referred here for those who got a molecular response, it correlated well to less progression.
Unfortunately where I live ie Scotland they don’t quantify Jak2 just positive or negative, I was diag 2010 but did first Jak 2 % test last year so no baseline.
I discussed Rux reduction of Jak 2 with my expert Haem in US and he said they are seeing substantial reductions in Jak 2 and the odd elimination with Rux, my BMB looked very good after 6 years Rux
Good to hear more on what we're seeing in the reports. Your Dr's practice likely is not handicapped by the selection bias of HU intolerant/resistant (HU I/R) pts that the Rux trials had. As in past posts, HU R is a large negative prognostic.
It sounds like substantial reductions are known, or even expected, in your Dr's practice. Your 2% VAF might be from this benefit, but no way to know for sure as you say. Zero is amazing, I assume that is rare in their practice. But as years accumulate with Rux for PV maybe we'll see more of that. From the Bes trials there seems to be different definitions of "elimination". Current lower measurement limit I think is about 0.01%.
GJH, do you mean that your platelets went too low on Besremi? I am currently on a continuous low dose of Besremi, and am curious to know if platelets going too low is common?
My platelets dropped to 80. The decline was continuous over about 6 mts when they were about 350. In the last month ghey dropped from 170. I would think this effect is mechanism driven ie suppression of blood cell production Unfortunately for me it seems the efficacy was greater on the stem cell for platelets than on the stem cell for red blood cells.
Good luck with the new treatment! Please keep us informed. I have this feeling that at some stage I will also be moving from interferon to ruxolitnib. Hope it works well for you.
I see in your earlier post you were concerned about your auto immune disease with IFN. Are these complications your reason to consider ceasing the IFN?
So far my cutaneous sarcoidosis has not been getting worse, just kind of lurking in a low level state (I have been on Pegasys since Sep 2022). Hopefully it will keep this way. However, I cannot help but notice that the new clinical team I am under (I just moved) has prescribed a lot of tests, including for several autoimmune indicators . Not sure whether that is their standard approach with any patient on interferon, or whether hearing about my sarcoid prompted this. In any case, it is not just about the autoimmune risk , I am also not sure how effectively my hct is being controlled. Overall, I see my therapeutic approach as a kind of journey, with each drug being a new phase with its pro's and con's that needs to be experienced in person (as we are so different in our reactions). In my mind, ruxo comes after interferon. Not sure how long the interferon phase will last but I honestly do not believe it will be life long (whatever that will mean!). I hope that your Sjoegren's is not proving a nightmare. I noticed with the sarcoid that it is so poorly understood , and a lot more is known and available for mpn's than for sarcoidosis. I was lucky (only skin) but it often affects lungs, eyes or other organs and can make life very miserable indeed.
That's great your A-I (autoimmune) condition is behaving. Sjo is unfortunately a nightmare, this is why I jump on any poster who seems at high risk while on IFN. Those other organs you note are affected in most Sjo cases. My one sentence Sjo description:
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"It's one of the most common autoimmune diseases while combining features of all the others to mess up any or every part of the body"
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Most A-I's are a mystery. You're right a quick check suggests sarcoidosis knowledge is low even by this standard. MPNs are way more understood than A-I's.
Your Dr is doing what I think all Drs should, an A-I check for all pts on IFN. I posted the long list of specifics I got checked after the fact: (there are plenty more if indicated)
thank you for suggesting the ifn/rux combination, will find out next week at my appointment what the docs think. Your experience with ifn has been on my mind since I started with pegasys and I watch like a hawk not only my skin but for any other signs. Glad all these tests were prescribed and that a critical view is being taken by the experts. I am very sorry about the Sjoegren's , what a challenge it must be! Thank you for your contributions, you offer great insights and information.
hi I was taking Rux for about 2 years before commencing with Momelotanib last July. Before Rux I was taking Hydroxycarbanide for many years. While taking Rux my spleen did not reduce in size and periodically needed blood transfusions. My wellbeing did not improve during this period and remained static.
I am sorry to hear things didn’t go so well on Rux as you had hoped re transfusions and spleen etc, I think it’s worth mentioning for other readers this is your experience while having MF. I think the poster has PV and transfusions are not necessary with PV, similarly , with PV spleen reduction is usually very successful with Rux. Also many report feeling much better on Rux with PV or MF. Wishing you great success with Mome.
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