Besremi 1 yr update: Hi, Time for a update as it... - MPN Voice

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Besremi 1 yr update

JohnSC profile image
17 Replies

Hi,

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.

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JohnSC
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17 Replies
Hopetohelp profile image
Hopetohelp

Thanks for the update. Always good to hear positive results.

Pat032018 profile image
Pat032018

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.

JohnSC profile image
JohnSC in reply to Pat032018

Hi,

I am not aware of of any effect on my liver from Besremi. I have a checkup every 2 months and so far no issues to report.

hunter5582 profile image
hunter5582

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.

Pat032018 profile image
Pat032018 in reply to hunter5582

Hi Hunter, John,

Regarding Besremi Titration

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).

hunter5582 profile image
hunter5582 in reply to Pat032018

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.

All the best my friend.

Pat032018 profile image
Pat032018 in reply to hunter5582

Thanks Hunter for your comments.

Meatloaf9 profile image
Meatloaf9

Great to hear that you are doing well and happy with the besremi. Are your WBC and Platelets also well controlled?? Best.

JohnSC profile image
JohnSC in reply to Meatloaf9

Hi,Yes my WBC and platelets are all within normal ranges. It is only HCT that is causing issues.

Meatloaf9 profile image
Meatloaf9 in reply to JohnSC

Thanks for the info. Best

Bobadog profile image
Bobadog

Hi John,Many thanks for the update,and good to hear things are going well.

I’ve been taking on Pegylated Interferon for 8 months,now fortnightly (60mcg)

Venesections are reduced from every 3 weeks to every 6weeks.

So the HCT is being steadily controlled I hope.

I’m UK based too.

There is a reluctance from my specialist (at Guy’s) to transfer to Besremi,due to the cost ,most probably.

Good luck,and look forward to the next update,

Best wishes ,

Bobbie

EPguy profile image
EPguy

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.

Elizka profile image
Elizka in reply to EPguy

Intense meeting? Anything you want to share?

EPguy profile image
EPguy in reply to Elizka

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.

JohnSC profile image
JohnSC in reply to EPguy

Hi,

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.

EPguy profile image
EPguy in reply to JohnSC

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.

Elizka profile image
Elizka

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.

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