After getting the prescription for Besremi, my husband is now tentative about starting the medication as he has be told by both the hematologist and the Specialty pharmacy that the side effects are pretty extreme.
I know that side effects are a “potential” - but the most worrisome one is the depression type ones, as my husband already suffers from a mood disorder.
I recall hunter saying that he feels better on Besremi than he has felt in 10 years, which is impressive.
Has anyone here experienced any severe side effects from Besremi?
He is currently on hudroxyurea and we are actually uncertain as to whether the nausea and fatigue are directly related to it. He has definitely had hair thinning / loss and we think that’s related to hydroxy.
He does have his second appointment later in February with the specialist at Stanford. He is the one that told me to think about both Besremi and Jakafi. I suggested that he wait to start until he has spoken with the specialist again.
Thanks for any insight……
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Laluna5683
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Besremi adverse effects may or may not be significant. Besremi adverse effects are dose dependant, like most any other medication. We are each different in how we respond to the medications. As I noted before, i have responded much better to Besremi than I did to hydroxyurea. Besremi is much easier for me to tolerate than HU and it is more effective.
I have experienced some minor side effects from Besremi. I experience itching on my back (histamine response) and occasional pop up rashes. A daily dose of Zyrtec keeps this in check. I experienced an elevation in Liver Function Tests to 3x upper limit of normal. A daily dose of milk thistle extract returned the LFTs to normal. I am experiencing mild lymphopenia and neutrophils fluctuate above and below the lower limit of normal. We do pay attention to the leukopenia and it is a dose limiting factor.
It is worth noting that fatigue and nausea are common HU adverse effects. If he did not have these issues before starting the HU, then HU is the likely cause. My PCP says that "The simplest explanation is the best explanation." Given that there is at least a reasonable likelihood that he is experiencing HU adverse effects, trying something else seems reasonable. He can always change again if Besremi is not suitable.
I would note that my positive response to Besremi is premised on the Low & Slow approach to dosing. I have reached what is likely my maximum tolerable dose at 175mcg. You may hear from others on the forum that they also favor the Low & Slow approach to Besremi. This includes increasing in 25mcg dose increases rather than the recommended 50mcg and not being in too much hurry for a rapid response. I was just discussing this with my MPN Specialist, who supports the minimum dosing strategy. She has noted more problems when doses get up to 300mcg or more.
It is very important to be realistic in our expectation of the treatment options for MPNs. We are making some fundamental changes in an essential bodily function that has been deregulated by a mutation in hematopoietic stem cells. The benefits of any one of the medications we use have to be balanced against the intrinsic risks. We each have to determine out treatment goals and risk tolerance. It would be very reasonable to consider jakafi as another treatment option. Suggest that your husband do a review of the benefits, risks, mechanism of action, and cautions/contraindications for each of his treatment choices. Compare these factors to his treatment goals and risk tolerance. This will allow for an objective decision about his treatment preference.
Thank you - good to hear about your low dosing as that is what he would hope for. And yes, the nausea is very likely a side effect of the HU. His nausea leads to vomiting and it can last for days, sometimes every week, sometimes once a month. Quality of life is not good. And then the hair loss! He’s come to the point of thinking the Besremi is worth a try. And…..we are fully aware that there are so many people in the world who would love to have the opportunity to try this drug, but don’t have access to it. He’s very fortunate to have this prescription - even if it will cost us thousands in co-pay. Quality of life is worth seeking.
These are tough decisions to make and I feel for you guys.
I have limited experience, since I've only had 1 injection so far, but I thought I'd add my perspective since my dosing is so different from Hunter's.
I am participating in the Exceed ET clinical drug study. It's the only means to obtain Besremi in Canada at this time. It has a high dosing strategy with a quick titration schedule. My first dose was 250mcg, and on Thursday I'll receive my 2nd dose, which will be 350mcg.
There are a lot of proponents of the 'low and slow' approach on here, and that really makes a lot of sense to me. It was scary to commit to the higher dose, particularly given EP Guy's experience, but it was that or nothing in my circumstance.
At any rate, I wanted to share that even at a higher starting dose my side effects were quite mild after the first injection. I've had mild itching at the injection site off and on, but not bothersome enough that I've even taken an antihistamine. I've had some headaches, but those were pretty par for the course prior to the injection. The biggest issue for me was having some very restless nights when I didn't sleep well post injection. I wouldn't call it insomnia per se, because I felt tired and was able to fall asleep easily. However, I woke every 45-90 minutes all night long, and just tossed and turned and felt generally restless. No pain or anything, just restless. I've never experienced anything like that before. It lasted 3-4 nights and then it was gone. Pretty uneventful over all.
I was able to speak to the patient ahead of me, who is about 5 months into the trial. She's been at the max 500mcg dose for months now and reports no major issues. Interestingly, she reports that her side effects are different each time, regardless of the fact she's been at the same dose for quite awhile. One time it may be mild joint pain and some mild itching. The next she may have mild nausea and mild bone pain. Sometimes it's just redness and mild itching at the injection site and that's it. She never quite knows what to expect, but says it has always been mild and only for a few days after the injection. Very manageable overall. In the 5 or so months she's been on it her platelets have dropped from about 1750 down to around 900. She had a super positive attitude and I was really grateful to have met her prior to my first injection. She's been very happy with her experience & progress so far and has no regrets.
You didn't mention his starting dose, so I'm not sure if that's of particular concern for you. Someone in this forum was kind enough to share some links about this higher dosing schedule that helped put my mind at ease a little, and I'm happy to share those if they're suggesting a higher dose for your husband and that's part of your concern.
I really struggled with my decision of whether to try this, but for me it really was the dosing schedule that I struggled with, as opposed to trying the drug itself. If I'd had the opportunity to do the 'low and slow' approach I don't think I would have hesitated. My original bone marrow biopsy said it was likely ET, but pre-fibrotic myelofibrosis couldn't be ruled out. While my MPN specialist is confident it's ET, I still feel quite nervous about possible progression and that was my biggest reason for wanting to try Besremi. Knowing your 'why' helps with not only making the decision, but also helps you get thru the tougher times when you might be second guessing yourself. Hunter was actually really good at helping me sort things out in my own mind and focus on what my priorities were, which in turn helped me make my final decision.
Whatever your husband decides will be the right decision for him. Sometimes it helps to remind myself of that. You do the best you can with the information you have, and reaching out to people on here is one of the best ways to learn more about these conditions so you can be more confident in how you want to move forward.
If you have any questions please feel free to reach out. 😊
Thank you for this information. His starting dose if 50 mcg. So yes, much lower than yours. And he is definitely grateful to be able to follow any dosing schedule that he and his MD decide is best.
We are both grateful to have the opportunity for him to try this drug - that’s it’s even an option. We are fully aware that there are so many people that do not have access for a multitude of reasons.
Hi Laluna, I was on Besremi at the start of last years, going up by 50 mcg every two weeks. I "had to" stop the drug because of a liver enzyme rise when I got to 250/300. Although the drug was already doing its job, my doctor at that time was unhappy with all the risks of Besremi; he had wanted me to take HU. I did nothing all summer as I let my liver mend (no symptoms that I could recognize though I felt low) and worked out how to afford Besremi. I got "financial aide" from the PharmaEssentia company for the last months of the year. I have been on a dose of 100 mcg from then until now. My body reacts quickly to the drug and my platelets went down from well over a million to 461 at last counting, with the HCT seldom going an iota out of range. I do not want to take a higher drug dose for this reason. My energy level and erratic insomnia are quite enough for me to handle at this dose. I am like the person WRLM mentioned who has different symptoms all the time, which makes me feel like a hypochondriac or whiner and makes it hard to keep track of what is caused by my PV and what by the treatment. I am ok for a few days after the injection, and then have little problems coming in waves-- for instance, an irritating burn/freeze sensation around my torso and arms or lethargy. Nothing I can't handle or really make more than a quick mention of at appointments, but yes, affecting my vigor more than I like. One recent problem is endless post nasal drip, which the oncologist says has nothing to do with PV or Besremi. Ah well, do they really know it all? Even specialists are "works in progress," I believe. Hence the function of this wonderful forum, to learn "on the streets" of the disease, from listening to other patients and their triumphs and pitfalls. May good health flow your family's way!
More great information to take into account and be aware of. Certainly everyone has a different response to medications and I’ll bet that’s it’s hard to know at times, what could be related to what. As far as the “work in progress” - there’s a saying that the MD has a “practice” for a reason. Best of luck to you.
Besremi IFN has been out for a while now. You should confirm your hematologist and the Specialty pharmacy are referring to this type of IFN and not the old ones (pre~2000's) that were for Hep C, harder to use and subject to excess dosing. Some drs are still stuck in that era.
*If your advisors are referring to Besremi, they seem to know something that should be shared here. Please follow up wit them. I would disagree that "the side effects are pretty extreme". This wording suggest extreme is common. But I do fully agree they can be very extreme, uniquely so among our meds.
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You may not yet have seen my posts. To your question: "Has anyone here experienced any severe side effects from Besremi" Yes, I am the top victim. You can read it in my recent post "Last Dose". A last dose of just 100 mcg did me in.
I have sort of strong wording here because your husband is in the neuropsychiatric category that is in the black box warning on the label:
IFN like Besremi and Pegasys are excellent meds and I had flawless counts (but felt better on HU) till it blew up. I was not in any risk category except a botched vaccine. But IFN is subject to unusually wide variations in dose and effects. Some need only 50 mcg, some the "whole bottle" at 500, and each can do well at these wide differences. The worst effects can occur rarely but unpredictably and at varying doses.
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From the mfr of Bes:
"If you develop any of these symptoms, stop using BESREMi right away." (emphasis mine)
In your husband's context these symptoms would be "Mental health problems, ... BESREMi may cause you to develop mood or behavior problems...that may get worse during treatment with BESREMi or after your last dose," Your Dr may be referring to this text. I suffered "New or worsening autoimmune problems."
It's the "stop right away" part that points to a need for particular care in monitoring symptoms with IFN. And the "or after your last dose" is significant to my experience. Bes has a long half life, meaning it persists for long periods. 99+% of the time this is great, it's why these IFNs work so well. But if one needs to stop, the IFN won't dissipate for quite a while.
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In general if one makes it through the 1st year or two IFN is more likely to be smooth sailing. This is in some old posts.
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Look fwd to hear what Dr Gotlib's group advises. I had his consult once.
Yes, I do recall your response to my other post as you were the only one who spoke about more serious side effects. And at such a low dose.
I should have been more clear when I stated that the MD shared her concern about the side effects. It was his Hematologist - not the Stanford specialist. So he will be meeting with the specialist at Stanford to move forward with Besremi. If he has any real concern I will share it here. But he’s the one who suggested that he look at both Besremi and Jakafi. He mostly chose Besremi because it’s an injection every two weeks. Easy, compared with taking the Jakafi (2 or 3 times?) a day That would be difficult.
You mention hair loss as a concern. Rux can prevent loss or even add some, I've had this benefit. But it's not approved for that in general use. But it can also add weight, a minus for most pts.
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On the severe sides, there is a small group of members who've had them or close calls, one on very low doses, as I've posted in disorganized ways. One is in this thread. That's why we need to watch on IFN. But it remains very much the exception.
The docs wildly disagree with one another about side effects. Whereas your Stanford docs are suggesting the side effects of Besremi interferon might be extreme, down at UC Irvine, the specialist there Dr. Angela Fleishman praises "how minimal" the side effects of Pegasys interferon have been for her patients and "how they feel back to normal" (see brief video below)
So I suggest that if your husband finds himself feeling bad while on Besremi interferon that he ask his Stanford doc to be switched to Pegasys interferon and then if they balk, he could consider making an appointment with Dr. Fleishman. youtu.be/OsdoYoA1kLQ
That’s great to hear, that she praises the low side effects. It takes trying it to find out. I wasn’t clear when I mentioned the MD was not the specialist at Stanford, but his local hematologist. I felt like she was trying to convince him to stay on HU. He will be meeting with the specialist at Stanford next month and figure out a plan with besremi.
I think I am an anomaly on this site! I was on Peg for two years or so. Did well blood count wise but had horrible GI side effects. It is interesting but I rarely, if ever, hear anyone, (on this site or others) talk about GI effects. I saw a motility specialist at University of Miami, and she said that interferons are known to be drivers of significant GI issues. So, is it really just me? Perhaps it is a delicate one to speak about? Mine manifested as IBS-D with horrible urgency, cramping and sweating. Affected my work, social and life in general. And when I say affected, that is an understatement. When Besremi was approved, my hemo/onco said let's switch to that and maybe you will tolerate it differently, as the dosages are spaced out etc. I think we were both just having wishful thinking. Same thing for the past year or more that I have been on Besremi. I cannot emphasize enough how debilitating this is. For reference, I was never on more than 45 mcg of Peg and 50 mcg of Besremi. (All that waste of the syringe!) I am 5'3 and 115 lbs. Both drugs were very effective with my hct and hemoglobin. But the GI issues... I am now trying one last time with Besresmi. Kind of a microdose at 25 mcg. Will see if it has any therapeutic effect and if the GI issues resolve. My only other choice is Jakafi.I was on it once for a short time and gained 15 pounds, which on my frame was an issue. I know it sounds vain, but the ladies here know that 15 pounds requires all new pants. lol
If you refer to inflammatory bowel disease this is an A-I and thus right there in the black box warning. Irritable BS is often connected to A-I's. For example Sjogren's can mess severely with GI including IBS. So you're not anomalous with respect to IFN vs A-I.
50 of Bes is indeed a small dose to get thrashed on. Another member also ran into trouble on very small doses. It's frustrating in that this means low and slow is not assured to be safe.
I get it well how messed up many A-I's are. But if yours is reversible you are fortunate in getting those extra chances. For this A-I type risk, Peg and Bes are equivalent, hence the similar labels in this area.
Same here on how well IFN worked on the numbers.
Dr Gotlib at Stanford told me never again rechallenge with IFN.
Understand on the Rux, weight gain was good for me but for most it's a bug not a feature. I'm now at my top desired weight (130lbs at 5'7") so I limit my food a bit. I am getting some better hair growth on it, a known side effect.
No, not IBD. Luckily! IBS. Whole different thing. Thankfully! I was just finding it curious that I don’t see many members having G.I. problems, and that’s the only real side effect I got. I guess as we all know, we are all different, and react differently to the drug.
Sorry for the confusion, brain fog is among the Sjo things. You're right it's not here nor in many reports. But if your Dr is seeing it that is notable. I recall another member said his Dr sees severe kidney effects, but it's only n=1 here.
I now see that inflammatory is the bad one, irritable is the less bad one. The calprotectin test is to know which one. I got this test, (negative) now I know why.
In this report there could be an A-I connection if diarrhea is present:
"Based on the science behind a new diagnostic test, diarrhea-predominant irritable bowel syndrome appears to be an autoimmune process in at least some patients, new research has found...For the first time, these studies have provided the basis for considering IBS-D an autoimmune disease"
Interesting, as nausea seems to be my husbands worst side efffect on HU. That and hair loss! But as we learn, everyone is different and perhaps the nausea will go away when he gets off HU. Wishing you the best.
I was on Anagrelide for 6,5 years, still take just one pill a day after having taken up to 6 today. This medication did a job on my heart. I always had a pounding after I took it, and it got worse over the years. Now my mitral valve has a 1 1/2 grade insufficiency.
there’s a chance I tried hydroxyurea for two days, and I had a massive neurological symptoms where I couldn’t coordinate my hands or even find the refrigerator properly. That was the end of that.
I started Besremi Oct 22 add 50 µg a day and slowly worked up to 200 mile at the same time, reducing the anagrelide down to one tablet a day. I must say with those Remy, my thrombocytes was slowly going down and remains very stable instead of hopping around as they usually did.
August 2023 my platelets plummeted to 253 in the normal range for the first time in 15 years!! in the beginning, I had almost no symptoms except excitement. I was on the edge the first few days. After taking it, I was touchy. I had some eczema and itching on my neck and inner elbow, but that one away after six weeks.
once the Besremi really kicked in and started to work, August 23 I was feeling extremely rundown and that’s when is thrombocytes or way down and the medication is working. I start the anagrelide. And by mid September, I started getting buzzing in my hands and feet pain under the balls of my feet my wrists, fingers shoulders, neck, hips. I had arthralgia in every single joint, where ever had an accident. I was no longer completely strict on my anti inflammation diet. I think that was also playing a role. I ended up reducing Besremi end of October 23 I have, and the terrible pain started again after the injection. This time it lasted for six weeks. In the meantime, I didn’t take any more injections for two months.
the thrombocytes started to climb very very slowly, and three weeks ago. I was up to 611 and one anagrelide a day and the pain is gone. I was able to walk again and wash the dishes.
Three weeks ago, I started the injections again but at 50 µg I felt a little tiny bit of sensitivity in my wrists, only as left foot that went away. Last Monday, I injected another 50 µg and they were no side-effects at all. Thursday morning as my BMB and I will know how many thrombocytes are doing.
there are no medication is that don’t cause damage somehow another some of us tolerate some of them better than others. As far as I know, most have had very good experiences with Besremi. From what I have witnessed with myself, and others is that it is important to try something new start at low dosages and slowly go up. And above all find out which nutritional deficiencies the medications, cause in the body and supplement them in order to be tolerating the medication best.
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