Time for a update as it has been 1 year since I fully transitioned of Hydroxy onto Besremi.
So far the experience has been very positive with no adverse effects from Besremi and no PV symptoms other than my HCT, which in the last 6 months has started to creep up to 47 every couple of months necessitating a phlebotomy. All my other blood counts are within the normal range.
Titration has increased over the year and I am currently on 500 every 3 weeks, but my consultant is talking about changing it to 500 every 2 weeks to see if that will control my HCT better.
I have read that it can take 2 to 3 yrs for Besremi to really have an impact on PV so hopefully the 500 every 2 weeks is only temporary as I enjoyed the extra freedom of injecting every 3 weeks.
Best Wishes.
Written by
JohnSC
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Thanks John for providing us an update related to your Besremi treatment. I am about 4 months into my treatment of Besremi currently at 200mcg dose. I have "slightly" elevated ALT and AST indicating liver effect of Besremi. Did you have any similar experience? Other than that, my CBC and CMP test a week ago both looked good. Thank you.
Glad to hear that the Besremi is working relatively well. It is really good news that you are not experiencing adverse effects at 500mcg. I have experienced AEs at 150mcg but am still pleased with my response and the effectiveness of Besremi, It is certainly preferable to some of our other options.
Wishing you success with your current plan. Please do let us know how things go.
My wife, who is not from the medical field, commented to me that Besremi titration could possibly be dependent on the physical attribute of the patient. I am 5'8" and weigh 130 pounds and maybe 150 to 200 mcg dose of Besremi will work just fine based on my 4-month treatment experience so far.
Also, I have asked my hematologist, who is known in the field of MPN and you have heard of his name, whether I am missing the potential molecular benefits of Besremi by staying at a relatively low dose; and his response was "No" (and I thought that response was just a personal opinion and not medically proven).
I think it is reasonable to think that body mass may be one issue that would affect the dosing needs with Besremi or any other medication. I have not seen evidence on this one way or the other but it does make a certain amount of common sense.
There are other issues too. One is certainly your iron levels. That I am quite certain of based on my own experience and feedback from the MPN Specialist I see. I also think that our individual genome affects how we react to Besremi and what our dosing needs are. Hopefully, the continuing research into the underlying genetics of MPNs will someday shed light on this.
I do agree with your MPN Specialist about the value of dosing levels of Besremi. I do not believe it makes any sense to take a higher dose than is needed to maintain a complete hematologic response without phlebotomy. Besremi is not a completely benign medication and we can and do experience adverse effects that are worse at higher doing levels.
We all hope for a molecular remission with Besremi. Even though some seem to doubt that this matters, I certainly think it is a good thing. However, we have to be able to tolerate the treatment since we will be on it for quite a long time. I am not willing to make myself miserable in pursuit of a molecular remission. I will stick with the minimum dose needed for complete hematologic response.
Thanks so much for the update. Having few symptoms is wonderful, so glad you're doing well.
I had intense Dr visit this week discussing my dosing for Bes.
I've been just over 4 months on Bes. I will post in detail soon with more data.
How long were you on HU? It seems your HCT was not fully controlled by HU at more than 15 pills/week is that right? And your HCT is a bit high on Bes also. But your WBCs are in normal range, that's great. Were they also ok on HU?
I saw you got a quick response at 50mcg of Bes at the start from HU transition, with an overlap for 3 months taking both. Did you increase the Bes dose quickly after that? Any side effects as it increased? (I'm extra sensitive here). I think 500 per two weeks your Dr proposes is the highest dose they recommend. You're right from what I've heard, esp HCT can take time to get right on Bes and then you could be able to reduce again.
I'm doing more research related to the subject. An issue is a familiar, Drs want to up the dose, patients want to not suffer the result of too much too fast.
I was on HU for about 18 months but it was increasingly evident that I was resistant to HU and it was no longer working for me and that I would need to change to something else.
I started transition to Besremi on 50 every two weeks and by the end of transition titration was increased to 250 with no AE’s.
I found it interesting that the dual therapy transition period was the time when my PV was best controlled with good bloods and no need for venesections. So if for some reason I can no longer tolerate the current high titration rate I will be suggesting I move to a dual therapy regime.
I agree HU combo may be a good idea if Bes dose gets too high and maybe could help some who get not enough HCT control. I would also want to try if needed. My Dr is not a fan of combining things however.
Hi. Thanks for update. I'm glad to hear things are going well for you! I'm 5 months into Besremi and now at 145-150mcg. I want to say that migraines are my only AE, but there is nothing "only" about migraines. I had migraines prior, but Besremi cause frequency. That said, new migraine meds and supplements have helped.
I did have a PB recently as Besremi has not controlled my HCT as it has my other counts.
Just wanted to see if you had an update on Besremi. I think it's now been about 3 years from now. Has your HCT come under control? Curious what the history has been of your RBC to see what range that fell into.
Hi Luthorville, thanks for your request for an update on my 3yr progress with Besremi.
The experience has been very good and I am symptom free and enjoying a normal life.
As a new treatment it took a while to find the optimum titration level but finally we settled on 375 every 2 weeks and this brought all my blood counts into the normal range except platelets which are below normal. My consultant is relaxed about this as he sees the low platelet count as a side effect of the interferon which has the added benefit of reducing my risk of thrombosis.
Earlier this year, as my blood counts were good, it was decided to move to a treatment schedule of 375 every 3 weeks and so far this has been successful. If this continues I hope to move to 375 every 4 weeks by next spring.
My HCT has settled in the 42/43 range for well over a year and my RBC is also midrange so it is all looking good.
Fantastic! That's great news. Has there been any discussion about reducing the treatment? Have they taken your allele counts to see if that has improved as well to a point where they might take you off treatment?
No discussions about reducing treatment at this time. We will first extend the period between treatments to 4 weeks and see if everything stays stable before considering reducing the dosage.
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1 Year on Besremi results
Besremi
