It appears that I’ve developed autoimmune issues whilst on Pegasys/Besremi (bad mouth ulcers and possibly Crohn’s in the lower oesophagus) so now have to switch to Ruxo.
I know EP has switched to Ruxo and I think Hunter?
I’d be very grateful to hear about other people’s experiences and in particular to what extent Ruxo can impact disease progression. All the forums are full of Interferon users singing its praises as disease altering, the closest you can get to a cure.
But I’m not aware of such a fan club for Ruxo?
Thanks and best wishes Paul
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Paul123456
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I was on hydroxyurea but could not tolerate it in part due to very bad mouth ulcers and other GI adverse effects. I am still on Besremi and tolerating it well.
EPguy and a few others have experienced autoimmune issues on Besremi. They can best speak to their experience.
I think the merging data shows potential for RUX to also be disease altering. All of our treatment options come with potential benefits as well as risks. Anything that has the potential for significant disease modifying benefits will always come with risk of off-target effects. We cannot make fundamental changes to how our bodies work without risk. We each respond differently to the treatment options. Currently, there is no way to predict how anyone will respond. Hopefully, as we learn more, personalized medicine will become viable.
You're right on the fan club, in the medical community some reports still state that Rux is not disease modifying. We know from two studies this is not true, using both VAF and events as disease criteria. Right here we see members on Rux reducing VAF including me. But our forum sample is not big enough to know about progression events.
I've posted variously on Rux and VAF benefits. Rux is the only med that explicitly studied the effect of VAF reductions on outcomes as an endpoint. This connection is still speculative in most the MPN community.
sample 12 year plot here with 2% VAF being the magic number in this study.
These two studies have shown Rux can and does reduce median VAF, and esp important, that doing so is beneficial.
The first study in that post found other mutations, ASXL especially, influence the outcome, with all ASXL pts with VAF data being non responders. IFN has shown similar effects as I recall.
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I see you got the RSV vaccine about three months ago. Did you get any other vaxes at that time?
I didn’t get it in the end but have had something like 8 or 9 Covid jabs. Is it possible this has triggered an autoimmune issue.
Thanks for your reassuring words. I remember when I was first dx in 2016, Ruxo was being lauded as the new wonderdrug. It didn’t take long for the optimism to fade and the debate moved on to whether it extended life at all.
Maybe it was dosage levels but opinion has u turned over the last few years. It’s definitely an identical drug?
I was on ruxolitinib for mf. It was good but my already low platelets were lowered too much so switched to fedratinib. Thi shouldn't be a problem for you. A downside for nhs is rux is expensive
It s possible the vaccines triggered an A-I condition. But more commonly the disease they protect against, and viral or bacterial infection generally, triggers an A-I so the trade off favors vaccination.
My case had a strong vaccine implication, but a lot of bad things had to align for my outcome.
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Rux had troubles with its high expectations in its initial use for MF. It is the same drug since its approval ~2011.
It's now known that its best benefit often has a time limit in MF, 3 years being one that has shown in reports. Hence the incentve for better Jak-i's. Now there are at least 3 alternatives for MF.
PV indication was approved a few years later and My Dr and posts here point to long term tolerance in PV. Now with the new reports we know getting a molecular response in PV should provide high odds of long term benefit.
On dosage, for the skin cancer risk, recent reports suggest not a strong dose correlation which is surprising. But when severe outcomes with IFN occur, it seems even low doses can be implicated based on posts here. Strangely the IFN trials seem to have no such reports.
I have developed colitis whilst taking hydroxy,( could be coincidence of course) I was hospitalised and scan showed inflammatory disease around the splenic flexure ( I had imagined the pain was to do with my spleen enlarging, not true). I was prescribed prednisone for 10 days and within a few days all pains , hip and shoulder stiffness, noticeable limp disappeared, all have since returned but last week I started on Rux as I also had poor response to hydroxy , mouth ulcers etc. I’m really hoping that it may have an effect on these auto immune symptoms ,as in the past I have been diagnosed with Polymyalgia and Giant cell arteritis . I see that trials have started in both rheumatology and Crohns disease with Jakinase inhibitors . I could be onto a winner if one drug hits all but I suspect that won’t be the case, too good to be true.
You're right on the Jak-i's in autoimmune. Rux targets Jak1 and Jak2. We think only about Jak2 in MPNs but Rux went after Jak1 deliberately in its design.
The A-I inhibitors go after all the Jaks (1-4) except for our MPN Jak2. Jak4 is also known as Tyk2. So Rux has some A-I overlap with Jak1 and may be helping against the worst outcome with my Sjo.
There are various on the market already, including some for both Jak1 and Jak3. Sotyktu is for Tyk2 (Jak4) and is specifically intended to reduce type 1 IFN signature, the sort we inject.
You're right none are total magic, but like so many for the right pts, they can work well.
Hi Paul123456 - I started on Hydroxy for a year, then Besremi for almost 2 years but then developed chronic hives last Fall. Besremi was stopped in September to try to get the hives under control and as of January I was switched to Rux after a period of no Jak2 meds. My VAF actually went up on Besremi 10 points (was at a high dose too 450), very disappointing plus to get chronic hives! The hives are finally almost under control after starting Rux and tapering the massive antihistamines. Itchiness is gone which is a nice benefit.
I haven't been on Rux long enough to comment other than no new side effects so far, but for me hopefully it will result in actually lowering VAF (on Besremi went from 22 - 32). It's helpful to be in contact with everyone on our experiences, and hopefully next year we'll all have good numbers and even more important feeling GOOD to report! Good luck to us all!
Thanks, what was the gap between stopping Besremi and starting Ruxo? Was this a clinical decision or just logistics? I assumed one could switch without a gap
Hope Ruxo works well, sounds like you’ve had a horrible time.
Thank you for asking, sounds like you have also had quite a time, Crohns is pretty scary!
My last full 450 mcg dose of Besremi was September 23 (the hives started around September 15, but went away with Zyrtec), then I had a 200 mcg dose of Besremi on 10/04/2024 and shortly after - the hives came back with a vengeance and stayed. I was referred to an allergist/immunologist who started me on massive doses of antihistamines. We had to try a lot of different ones and amounts to finally get the hives managed to a low level of breakouts. My MPN specialist (who I like a lot) wanted to see the hives under control or at least better understood before starting Rux. They eventually decided it was auto immune. So it was partly a medical decision but also partly logistics because of the new year, my insurance changed slightly and I wasn't getting a co-pay card due to some misunderstandings. I probably would have started the Rux sooner, but that had to get worked out financially.
In the meantime I had a phlebotomy in early January, the Besremi was pretty long lasting until then when my HCT went above target. I started the Rux mid January and so far so good. In fact the allergist & MPN hematologist thought Rux would help manage the hives, and sure enough I have tapered down to only 1 last medication for hives Singulair (which helps manage leukotrienes and mast cells I think?). I'm hoping to taper off of that in the next week or so.
Is the Rux or other meds for your Crohns helping you? Hopefully so. It's definitely a marathon with these MPN's! It seems there are more of us recently who have had to give up on INF - so disappointing. Hopefully Rux will be good for us in the long run. Best of luck and hope you continue to post. Fingers crossed!
Thanks, I’ve not started yet. My next dose of Besremi is due next Friday but I’ll obviously stop this and hope to switch then.
My Consultant wants to wait to see whether stopping the Besremi (plus very high dose steroids) will clear up the ulcerated part of my lower oesophagus without needing targeted anti Crohns therapy.
I recall we've posted together before. Your 3 months holding bloods after IFN matches mine. In my case PLT, my rbcs have never been a big issue.
You seem to fit the Last Dose outcome like I had, a single last dose caused persistent durable damage. Mine also was reduced 100 vs my usual 140. Like me you also had sudden but seemingly non urgent warnings shortly before that last dose.
Were your blood counts fully controlled while on IFN? That is frustrating to have increased VAF and A-I from the experience.
Hoping Rux continues to keep all that at bay for you and get that VAF turned around maybe. My severe A-I has no treatments but Rux may be helping some.
Hi EPguy - yes we have posted and agree on the last dose outcome. I am hopeful that my A-I hives won't be as chronic and untreatable as your A-I outcome, and I hope that new treatments are coming soon for your Sjogrens! Don't you just hate being "unusual", an "outlier"! Plus I never imagined that my VAF would actually go up after almost 2 years on Besremi! Have you run into anyone else who had your Sjo outcome from IFN? I am hopeful that Rux will work for me and also hope it works for you and all of us who have had to ditch IFN. It was so disappointing.
As for my blood counts, after almost 2 years on Besremi my platelets were in the 200-300's well controlled and my HCT (which is more of an issue for me) were in the low 40's... it took that long on Besremi to get there, and then came the problems. So now on to Rux and hopefully a better outcome. Best of luck to you - I appreciate your posts and keep learning from them. Thank you!
I expect your hives should have multiple treatment options and might be "self limiting", heal on its own over time. I had a brief period where my Sjo almost did that, but just missed the top of the hill.
VAF up on IFN must be "unusual".
There are a handful of members here who got Sjo while on IFN. Sjo is ~10:1 women, and it seems to follow that here, I'm the only male who has "caught" it associated with IFN. On avg women get a less severe presentation, and that may be showing here too, but can't say for sure. Conversely there are a couple members of the Sjo forum I helped to identify their MPN.
In the Bes trial Sjo was "common" but I suspect the trial sponsors didn't appreciate the dire implications of that.
It's unfortunate we got kicked off IFN, I also had perfect counts on it. But same for Rux in my case, hoping you also get those counts on Rux.
VAF is variant allele frequency, which is what portion of a certain gene is mutated. For MPNs Jak2 is the one most often of interest. So a VAF of 30% would mean 30% of the Jak2 genes are mutated. It's the same as Allelic Burden (AB) which you also see here. The mutation is v617f, the "good" v gets replaced by a "no good" f. Regulars here including me do get lazy with the acronyms.
Jak2 mutation for MPN was discovered fairly recently, in 2005.
Other basic ones in MPNs are CALR and MPL both associated with ET.
ASXL1 is one of over hundred other genes that can have mutations in MPN or other blood disease pts. There are sort of inaccurately called "non-driver" mutations. Two others you will often see in posts here are DNMT3A and TET2. A complete diagnostic test will include many of these.
Thank you! I wonder if the forum moderators would mind putting up a key (like maps have) that has a list of all of the acronyms/abbreviations spelled out?
Switched from besremi to rux 8 mos ago. 2 years of besremi failed to control my hct so my mpn recommended I try rux. I can’t speak to the effect of rux on my allele burden yet but rux has stopped all itching and my labs last ok better than ever with no phlebotomy for 8 mos. So far my experience with rux has been amazing. We are all different of course but this is my experience on rux so far. Best of luck.
hi Paul I’ll put my two hands way up for Rux after 18 mts on Bes re disease progression both have eliminated my need for phlebotomies The side effects I had from Bes were really debilitating Rux has been AE free aside from the well recognized weight gain
Hi Paul belatedly!I was on peg interferon not besremi for 6 months and it made me so poorly I thought the end was nigh! Really really severe bone and muscle pain, dizziness, fatigue, in the end nausea and vomiting.
Turned out it has attacked my autoimmune system,
I m now a full blown coeliac and hugely "allergic" to gluten , although of course coeliac is an autoimmune condition .
From what I ve read I was lucky to escape other things as well such as lupus
Anyway, Rux has been brilliant so far and fingers crossed, so I wish you all the very best.
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