Edited to show PV - Rux (rather than MF-Rux ) effects info
I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine. But his 1st choice is Rux. He said it has fewer side effects and is best for symptom relief.
I have PV Dx with ET features.
I opted to go with INF since, as in many posts, it works at a deeper level than Rux and has potential to reverse MPN disease for a certain subset of patients. I'm also concerned about immune suppression with Rux.
I will stay with Bes for a year at least. It's supposed to be usually ok long term if we make it thru the 1st year. But if it does not work out, Rux is tempting. I believe some members with PV are on Rux.
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I recently looked up some easy to read tables of their respective adverse reactions. See image here, and my own reply for 2nd image, for the two lists. If it's hard to read, see the links.
The lists are similar in length. But Bes has higher frequency for most effects.
Also, there were few serious reactions on Rux, while Bes had <<Serious adverse reactions were reported in 16% of patients in the PEGINVERA study>>
These effects diffs are consistent with my Dr's advice.
I am right now having the "dizzy" in Table 2 just after my latest Bes shot, but it's not bad.
The mean Bes dose for this effects table was 334mcg, more than anyone here has reported taking so far.
I do think that Jakafi is a very good option for some people. It is more effective for some types of symptom control. I agree that the long-term benefit profile of Besremi looks better. Like you, that is why I opted for it.
Thanks for the heads up. I found the RxList site also has quite a few effects for Rux in text form, see here. Also on the point, I found tables there for PV in Rux. This should be more comparable to the PV results for Bes. These tables includes hematological effects, which tracks the results you have better.
I've edited the top post to show the Rux PV table.
Seems minimal serious effects in PV, and non-hematologicals are not more than 15%. But anemia is very high occurrence at 72%.
hives,
difficulty breathing,
swelling of your face, lips, tongue, or throat,
blisters or painful skin rash,
changes in the size, shape, or color of a mole or skin lesion,
problems with speech, thought, vision, or muscle movement,
I think the bottom line is that all of the meds we use to treat MPNs have risks and potential significant adverse effects. That has to be balanced against the adverse effects of doing nothing. It is all a matter of using our best judgement and carefully monitoring the results of our choices.
I agree. My Dr makes INF seem particularly worrisome so I'm looking deeper into why he feels that way. There is something to it if the level of serious events are noted
.
Another item got my attention was a member "pepper-" here suffering severe edema while increasing Bes dose.
Hello guys, I always follow your discussions with great interest; opens a lot of new insights for me.
I'm on Besremi since July 2021 (having a PV diagnosed in January 2021), but with a very low dose ever since. Right now I take 65µg every three weeks and in the long term - so far - Besremi works very well for me.
Side effects are very low - only dry nose / mouth - and I haven't had a phlebotomy since October, blood counts are close to normal.
In my experience a lot of side effects come with higher doses, but as Besremi, or Interfereon in general takes some time to work, I don't understand the rushing of so many docs to increase the dose. Maybe it's because it's new and you want quick results, IDK.
Nevertheless, IMHO a lot of people would tolerate Besremi much better, when they are taking there time. Just my personal point of view... I'm open to comments.
Thanks again for sharing all your thoughts and experiences here, helps a great deal.
Thanks for the real life experience. Sorry for the unsatisfying and not so well organized post. My Dr keeps me second guessing my choice to go with INF. The idea of symptom-free bliss on Rux that he implies is enticing. But as our members below note, Rux is not all magic either.
Your point on dose and patience is consistent with many of our discussions, and as you say in conflict with some Dr preferences. Thru the history of INF for MPN it seems excess dosing has been a big issue.
The Bes report here was on 334mcg. That is 4 to 8 times your dose depending on dose interval they used, and 2 to 3 times my current dosing.
I do think that the data here do show higher and more frequent risks with INF. But my take is if we are careful with dosing this difference should be mitigated or even reversed, and the odds will nicely favor us toward good outcomes with INF's unique upsides.
When I was on Jakafi I got shingles followed by a contagious eye infection. I also gained weight, not much because I really watched what I ate. I was also apprehensive about the potential for non-melanoma skin cancer because I live in a pretty extreme climate. I'm on Besremi and the only side effect has been dizziness, but that went away after a little while. Of course, I'm only on 50mcg every two weeks and that has been enough to keep my numbers controlled. My hematologist doesn't see any reason to increase the dose given my tendency to get side effects.
Thanks for reassurance, see also my reply to WeylandYutani.
Shingles is on the Rux effects list at 6%. But for you that was 100%, and that is what matters.
I see that they sometimes give the shingles vax before starting Rux, but there's no clear data on it I can find.
Your dose is also far less than used in these reports, similar to WeylandYutani. Good your Dr is agreeable with that low dose. I'm at 110mcg for now, (same as Hunter) and am in no hurry to up that. I do hope to lose the dizziness effect. I've had one extra bad day since starting Bes.
I see also in the Rux effects, discontinuing it has many unique risks. INF is not fussy in that way from reports we've seen.
Hi EPGuy. I have been on Ruxolitinib for 12 months and have recently been told by Guys Hospital, who has been treating me, that I have to stop taking it and swap to Interferon because It's highly likely that Ruxolitinib has caused the melanoma on my leg. Also it has not lowered my platelets as expected. It's advised that if you have had any kind of skin cancer, BCC etc, in the past you should not take Ruxolitinib.
Melanoma is on the effects lists, although not in the table format of effects. So they don't have % occurrence data. But as with Orangeboykitty above for shingles, your occurrence for melanoma was 100%.
An interesting note I just thought to look at, Rux, at least as used for MPNs, does not have a US FDA black box warning, (the most severe side effects) while the other two therapies we commonly use, HU and INF, do have black box warnings. The experience of member "pepper-" may reflect that.
I see you have eye troubles in your history. INF has been associated with retinal problems. (retinopathy) I think your eye trouble was in a different part but there is suggestion for eye risk patients you should closely follow along with your eye specialist for any INF complications.
But as above, if we are careful with dosing INF seems worth it for the upside.
You are correct about my sight which I lost 10 years ago due to undiagnosed Giant cell Arteritis. However since taking Ruxolitinib I have been having visual disturbances in my remaining eye. I forgot to mention the weight gain of over 1 stone and the breathlessness. I shall be glad when I'm off it. But don't be put off because others on this forum have found it a wonder drug. I'm just one of the unlucky ones.
Weight gain is a issue we see often on the forum with Rux. Another source of stress that's not helpful. Rux also can affect immune response, possibly relevant to covid vax etc.
It's clear you are a high risk patient in your eyes, including blood vessels. I can't judge whether it's an actual risk for you but I suggest you should discuss with an eye specialist if you're starting INF. I happened to have a full eye exam last year (eye pains) and feel more comfortable on INF having no troubles found. I may return for a check up.
<<Ophthalmologic toxicity has occurred in patients receiving interferon alfa products, including BESREMi. These toxicities may include severe eye disorders such as retinopathy, retinal hemorrhage, retinal exudates, retinal detachment and retinal artery or vein occlusion which may result in blindness.>>
Many thanks for the info. It certainly gives me great concerns and certainly something my Haematologist hasn't mentioned. I will now go back to my Optomitrist.
Hello, I’m in Florida (PV for two years, 78 yrs) and on Rux for a year now. I first have to thank all of you for your advice, experiences and triumphs; you are all so reassuring.
Have had a tough time adjusting to Rux, wonder every day whether the fatigue, nausea and diarrhea are from the PV or the Rux. I was on HU for 2 days at the beginning of my treatment, naive and scared, so when the HU made me so very ill, I asked my specialist to change. He picked Jakafi.
I take one 5 in the am and 2 5’s at night. My regular in-town non-specialist hematologist is incredibly pleased with my numbers. I look normal on the lab work, but I’m certainly not normal day to day. Since I’ve given Rux a year try, I was thinking of a change to Besremi. Reading everything you are experiencing, I’m not sure now.
I have to make the decision, but what if I do, and I feel no better on the Besremi? Where do I go from there. I guess, like the Rux, I’d learn to live with those side-effects. All of it is pretty scary, but my husband, the best caretaker yet, is optimistic, funny and full of encouragement.
I couldn’t ask for a more understanding person. We both feel fortunate to be 78 and 80. Many of our friends didn’t make it that far. We miss them.
You had intolerance to HU after just two days, that is a very quick message.
I had very good numbers on HU, as you do for Rux, and many Drs look only there. But I still had too many bad days. It did help keep me alive I think, so that is good.
My Dr also favors Rux, as discussed above.
One message from my not-so-coherent post here is these meds we take are serious stuff and while the concept in this reassuring cartoon Besremi presented (see image) is a big reason we take INF we need to stay aware.
I am still planning to continue with Bes because I do believe this cartoon. And I would not take my messages here as a reason not to switch. Is your Dr ok with the switch to Bes? If so I do suggest you try it as it could give you relief. Orangeboykitty above has done well with the switch, this is how we learn from each other.
If you do switch, you need frequent blood counts including CMP during the early treatments to watch the liver, kidneys etc. This is in the procedures. Also, as we learned from each other here, take extra care on the dose, with the smaller doses we see on the Voice the effects in my posted tables here could well be less, as these trials used large doses.
Thanks so much for the expanded info on both Besremi and Rux. Love the cartoon. All my knowledge about Besremi I’ve gotten from this forum. My local non-MPN expert hematologist here dislikes interferon, none of her patients last on it because of side effects. She doesn’t have anyone on Besremi, yet, so she’s interested in what the expert, Dr. Kuykendall, at Moffitt in Tampa has to say. I won’t see him for a couple of months; his nurse practitioner sees me in between his appointments with me. I’ll ask her about it and their experience with it.
Again thanks for answering me so promptly. Your insight and interest adds a lot to this forum.
I’d be interested in anyone else’s experience going from Rux to Besremi.
"None of her patients last on it." That suggests something out of the ordinary, we see right here most do ok on it. I wonder whether she used the modern INF types (PEG for example), or if she is dosing too high. The early INFs were hard to tolerate.
I am my Dr's first Besremi patient, he does have some on PEG. So we are learning together.
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