I shared prior that I upped my Besremi dose from 150 to 180 the past two months.
All was going well with several benefits which hadn't happened the past 18 months on Besremi:
My JAK2 Allele dropped more than 20%, I have not needed a PB for months which means I now have normal iron numbers, and my RBC was in the normal range which it hasn't been since DX years ago.
I attribute these benefits to the increased dose, even thought it was minimal.
But, my WBC's have been trending downwards, (see image: Lymphocytes: 0.9, Neutrophils 1.6). As a result, my HEM suggested I go back to 150. If WBC doesn't stabilize, he told me to reduce to 100 every two weeks.
I know others on Besremi have had similar issues with WBC getting too low.
I wish we could find a way to bump up our WBC's to the normal range while allowing Besremi to reduce HCT, RBC, PLT RDW, etc, and Allele Burden.
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Elizka
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That looks pretty similar to my numbers. Unfortunately, when hematopoiesis is suppressed, it usually affect all lines of blood cells. It is all a balancing act.
I was thinking what you've said before: "It is all a balancing act." Love not getting PB and having iron in my body; Excited AB has dropped so much, but concerned about being more susceptible to infection and illness with lower WBC's.
I'm going to start taking Host Defense Mushroom Immune Support. It is a great product my family has used, but I have not taken it prior as I had too many WBC's.
I am taking something similar to boost my immune system. My Integrative Med doc recommended a Rishi-Astragalus blend. Hopefully it is actually boosting he immune system. My docs are not particularly worried unless NEUT < 01.0 or LYMPH < 0.50.
it’s seems it’s due to higher dose as you say , dropping from 180 a fortnight to 100 fortnightly maybe overkill, but you could try it and tweak in between. One of my haems said neutrophils shouldn’t drop below 1, I suspect that may be general rule but best check that, lymph’s at 0.9 is very common, mine are rarely above that and again my Haem wasn’t bothered, apparently there are lots of lymphocytes else where in the body that don’t show in blood. Congrats on the AB, looks like it’s all going fine maybe just a dose tweak needed.
Thank you. Yes my HEM said individual counts in WBC were still decent. Lymphocytes: at 0.9 were "okay" and that I didn't require intervention. Not sure what that means? Didn't know that about Lymphocytes being elsewhere in the body.
I wonder if you could do alternating dosing if it came down to it. Like 100 then 150? I have no idea. This is just me saying you may ask. I have zero clue if this would work, but for some meds it will make to where it averages out. But again this is me just say to ask. Just glad to hear it worked. My numbers are good but still working on the platelets. Hct was good last time but had a small phlebotomy in May. Just been about 5 months on it. I am at 175-180. Will see next month. My platelets dropped from 1.7mill to 700. So can’t complain too much. Good luck! If you ask let me know what they say
I have now been on Besremi for 2 months and have titrated to 100mcg. Everything was going smoothly and then I developed increased urination and very high blood pressure. I have always had hypertension and it was fairly controlled, yet 189/110 is not a number I was comfortable with! I contacted my MPN office and they directed me to go the ED. Tests were done and I do not have a UTI infection and all numbers, particularly my glucose, were normal. ED doctor said this must be a side effect of medication. I am increasing my BP medication but concerned that these symptoms may be a side effect of Besremi. The increased urination has now lasted 5 days . Has anyone experienced these symptoms.? I contacted PharmaEssentia and spoke to someone so they could record this as a possible adverse event. Look forward to hearing from the Besremi community.
HTN is one of the known potential adverse effects from Besremi.
This warning is from the PharmaEssentia patient information site.
Call your healthcare provider right away if you develop weakness and tiredness, bruising easily, nose bleeds often, fever, chills, burning and painful urination, urinating often, or coughing up yellow or pink mucus (phlegm). besremi.com/?utm_source=goo...
Suggest a prompt return call to your MPN Specialist is in order.
Please do let us know what you learn and how you get on.
Has anyone experienced headaches while on Besremi? I developed a pretty bad headache on right side of head 3 days ago and it is still with me. Tylenol relieves it temporally, but it does return. I am a person that never gets headaches. I am trying to refrain from using Tylenol too frequently since my recent CBC check revealed elevated AST, ALT and one other. I will be seeing the MPN nurse this week and will have several blood panels done. I really want the benefits of this drug to outweigh the risks, but now having elevated blood pressure, a new headache and increased anxiety about taking this drug, is it worth this journey? Appreciate responses. Thanks!
It is always a balancing act with treating MPNs. While I have responded very well to low dose Besremi, I have experienced itching/rashes, mild lymphopenia, borderline neutropenia, and elevated AST/ALT 3x/upper limit of normal. The itching is well controlled by Zyrtec. My Integrative Medicine doc recommended Milk Thistle Extract to support liver function. My AST/ALT returned to normal.
You are wise to be careful with acetaminophen since it is also hard on the liver. It is worth discussing with the MPN nurse. Hopefully you will find that you can manage the side effects and benefit from the Besremi.
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Updated numbers on Besremi...interesting
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