I've taken my first 100mcg dose of Besremi and would like to hear from others how much they increased their dose, and in what time frame.
I was prescribed Besremi by my MPN specialist, and will of course consult with him regarding dosage increases. However, I am reading the Besremi titration guide and see that it instructs dosage increases of 50mcg every 2 weeks. It seems that many of you have not increased this quickly, and I am wondering if this was due to the direction of your hematologist, or was in part personal preference.
My own preference would be to go slow in dosage increases, as it seems I am often overly sensitive to medications, although I have never taken IFN before. I took 2000mg daily of HU for almost a month but ended up in ER with breathing problems, angina, dizziness, and shaking so badly I felt like a paint mixer. It has been 9 months since I stopped HU and I have only had monthly phlebotomies. Currently my HCT is 47 and platelets are 930.
Should I boost the next injection dose to 150mcg or ask my hematologist to go slow>
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I am one who has moved slowly on increasing the Besremi dose. I started at 100mcg. I did smaller dose increases. First to 110mcg, then 125mcg, and then to 150mcg. I am now in complete hematologic response at this dose. Making these decisions was a collaboration between myself, the MPN Specialist and my local hematologist. Note that I was the first person at the Johns Hopkins MPN Clinic to start on Besremi. We have all been learning together how best to manage this new medication.
My MPN Specialist agrees with the target of HCT 45% but does not get to worried until it gets >47%. He and I were willing to go slow since I had been stable on Pegasys and had just started to creep up above 45% when I switched to Besremi. I have experienced some mild side effects, itch/rash and mild lymphopenia - borderline neutropenia. Since Besremi also depresses the leukocytes we need to be careful to ensure LYMPH>0.50 and NEUT> 1.00.
The bottom line is that all decision about dose titration should be a collaboration between you and your care team. You do not have to follow the standard titration guide if you would rather move more slowly. You do need to pay attention to your risks factors and not let the HCT get too high. You can always opt for another phlebotomy if you need to and take the Besremi dose increases more slowly if that is your preference. Suggest you discuss your concerns and preferences with your hematologist and reach a consensus.
Thank you for your response Hunter 5582. I always gather great information from your informative posts. Your experience reinforces my thought that it would be wise to proceed slowly in dosing increases, and I'm sure my specialist will support this decision. I will also track my lymphocytes and neutrophils closely as I proceed.
Unfortunately my phlebotomies are proving harder to obtain than even the Besremi (which took 4 months). My MPN specialist is great and ordered a phlebotomy over two weeks ago. However the local infusion center that performs the procedure has still not allowed me to even schedule. I have called repeatedly, but am told that it must go through approval from the pharmacy, nursing unit, and insurance before they can schedule. It has been over 6 weeks since the last phlebotomy, and that was 8 weeks from the previous one when my HCT was 49%.
This is the sad state of healthcare in Oregon with understaffed facilities. I had to 'fire' my local hematologist, as their incompetence and disregard during our 5 minute visits was detrimental to my health. They belong to the only hematology group in our region, which rivals any big box store with their lack of customer care.
Sorry to hear about the problem getting the phlebotomy scheduling. I have never heard of such a thing. My doc orders them at a set interval which can extend out for months or as long as a year i think. All it takes is the doctor's order and I am good to go. I do not understand why the pharmacy and nursing unit would even be involved in a therapeutic phlebotomy. I do get insurance has to approve but that should be a very simple process.
Keep at the self-advocacy. it is the only way you will get anywhere. Sorry to hear you had to fire the old doc. Been there and done that myself. Sometimes providers do need to be replaced. We all deserve high quality care. Sadly we must sometimes travel to find it. it is worth the trip.
I live in rural Colorado and have also had difficulty scheduling phlebotomies. I've taken one dose of Besremi at 50 mcg. I will take my next dose Tuesday and stick with 50 mcg then and likely up it to 100 mcg for the following two doses.
Besides the side effects, how do you feel on INF? I was diagnosed 4 years ago and don't remember what it was like to feel 'normal'.
Since therapeutic phlebotomy will remain a mainstay of your treatment until the Besremi kicks fully in, it is unconscionable that your phlebotomies would be delayed. It sounds like organizational incompetence. Suggest tireless advocacy is indicated.
My Besremi side effects have been very minor. I feel much better on Besremi than when I was relying on the phlebotomy-only approach. My energy levels are improved as is my ability to concentrate. The alopecia is improving and I am no longer experiencing the reactive thombocytosis the phlebotomies/iron deficiency caused. On the whole, my quality of life on Besremi 150mcg is improved.
I’ve been able to tolerate Besremi well, too. The only reason I was even able to start it was because I contacted PharmaEssentia myself.
I did have a new doc at my local oncology office focus more on iron than any other doc. I read that it’s a double-edged sword on that we have too many red blood cells, thus too much iron, yet two tests he ran (I can’t remember right now) came back with low iron levels, likely due to phlebotomy. So can we include more iron in our diet or should we avoid it? I’ve been doing the latter.
The answer to your question about iron is a bit complicated. The short version is that it is a balancing act. It is the intent of the phlebotomies to make someone with PV iron deficient without anemia. It is the iron deficiency that controls the erythrocytosis. The body cannot make RBCs without iron. Much of the iron the body uses is recycled from RBCs as they are cycled out and replaced with new ones. Removing whole blood removes iron.
Treating PV with phlebotomy induces iron deficiency, however, the iron deficiency can also have adverse effects. It is also possible to overshoot the mark and induce anemia. Phlebotomies need to be done at a frequency to control erythrocytosis without making the body too iron deficient. I know this from my own experience of being overphelbotmomized and having HCT drop to 32% (anemia). Even when my HCT returned to normal, I started experiencing iron deficiency side effects that were worse than the PV symptoms.
When ny irons levels were way to low, I took iron pills for a while at my doctor's instructions; however, they made me really constipated. This felt worse than the anemia. I elected to let my body recover on its own with an iron-rich diet. Once I got my HCT back up to an acceptable range I backed off on the diet and just consumed a normal amount of iron. I do not seek out nor avoid iron-rich foods. this is possible because the Besremi is working to control the erythrocytosis. Otherwise I would be back on the iron deficiency balancing act, which is a bit like walking a tightrope.
Wow, I think you hit the nail on the head about iron levels and PV as a balancing act. I'm calculating my own tightrope show: low ferritin levels, high HCT, started Besremi 3 weeks ago, just had a phlebotomy (yay!) and the MPN specialist advising that I may need to start taking an iron supplement. Factor in my persistent symptoms of iron deficiency anemia (or PV?) such as shortness of breath, dizziness, fatigue, chest pain and the final answer is clearly I need more iron. Or not.
It is tricky to figure out. You can be iron deficient without being anemic. if you have high HCT then by definitiion you are not anemic but you are iron deficient. And the iron deficiency without anemia can still cause problems. Some of the same problems PV can cause. Hopefully the Besremi will kick in to control the erythrocytosis and you bring the iron levels back up.
The chest pain and shortness of breath are so aggravating, as is the fatigue, of course. I just want to be phlebotomy independent. I will increase Besremi to 100 mcg in a week and a half. Talked with my doc today and my CBC shows my levels are already stabilizing just with 50 mcg.
Thank both of you for your insight and comments. It really helps to not feel so alone in dealing with this disease and all that comes with it.
It is really good news that you are already responding to the Besremi at 50mcg. I started at 100, then went to 110-125-150. I am now stable on 150mcg and doing well. i really do feel much better now than when i was using phlebotomy-only. Wishing you the same.
That's great! I'm glad you are stable. I'm still waiting for my insurance to approve Besremi. I've gotten 'quick start' doses from PharmaEssentia. Were you approved quickly?
No I was not approved quickly. The initial request and first level appeal were denied. I went to my plan to get a copy of the plan rules the decision was based on and Cigna (Medicare part D) was not able to produce them for me to review to file the next stage appeal. As a result, I filed a Medicare Grievance. After about 14 hours of phone calls, one of the Cigna navigators identified that the appeal had been processed improperly. By the time that my doctor went to refile, Cigna told him not to bother because they had already approved the Besremi. It appears that my prior efforts were successful.
Note that this was shortly after Besremi was FDA approved. I was the first patient at Johns Hopkins to start on it. Possibly the first request to come through my Cigna plan as well. Hopefully others will not have as much trouble at this point. It is one of the only two medications that are FDA approved for PV.
If you run into problems getting the Besremi approved, it is very important to understand the plan rules for your insurance policy. These may be posted on the website or you may need to request them. Successful appeals are based on how the plan rules work. If you find the process too difficult to manage on your own, there is assistance available from Patient Advocates in the USA. Here are a couple of links just in case you need to hire one.
Thanks for the info! Insurance (Presbyterian/CVS Caremark) denied approval of Besremi and denied both appeals. I've been able to get it from PharmaEssentia Source, for now.
I appreciate the links and am glad you were approved!
I live in OR & haven’t had any of your problems. I was pleasantly surprised when my Besremi was approved so quickly. If you live anywhere near Salem I’d recommend Dr Pierce at Oregon Oncology Specialists. I’ve never had to wait for a phlebotomy.
I went through the HU to Bes transition. We started at 50 last Feb and very slowly increased. I'm at 140 now. I got a complete response (CHR) at 75, but Dr wants to keep increasing. We have some difference here, and being the one sticking myself I do get a say.
I've posted on the relation between CHR and molecular response (reduction in allele %). They tend to go together (but one does not assure the other) so achieving CHR should be all we need to do if we're looking for that molecular response. But same as Hunter, I am Dr's 1st Bes patient, and no one can claim to really know the best dose approach.
I think some of our best info is from this forum. I asked members recently on this subject and you can see the result here. Those with CHR don't need that much dose. The tall boxes on the right are what the Bes titration guidance led to, very large doses. My Dr explained that in drug trials there is almost always higher dosing than in later real use. This is to get better odds of success, as I called it "a preference for success".
Thanks EPguy. Your chart indicates CHR can be achieved for many people at a relatively low dose. I agree that real world results from forum members provides the most relevant data for many of us. I'm glad to hear you reached CHR at 75mcg and in reasonable time. Best wishes for continued success!
I might be a bit of an outlier here, but I started at 50 in June and have gone up by 50 every two weeks and will be injecting 400 later today. I’ve been tolerating it well (some minor fatigue and very minor and infrequent nausea which is taken care of with Zofran).
My bone marrow biopsy showed progression and a high allele burden, so I think my doctor is being aggressive for those reasons. My numbers are starting to respond (the lowest platelet and WBC counts I’ve had in years), but they are not in the normal range yet. He’s one of the MPN specialists in the US, but I’m his first patient on Besremi. He said that he finds it easier to get to the max (if tolerated) and titrate back down based on the numbers.
Good luck to you and good luck getting the needed phlebotomies. I hate that you’re having to fight for those! Seems ridiculous.
GardNerd, it's wonderful to hear that your counts are improving and you are tolerating the dosage as in increases. It's interesting that your doctor is taking the dosage to the max and then will lower based on your numbers. My doctor said he will increase dose slowly so that I can adjust, but I never thought to ask if he would stop increasing if CHR is achieved.
As for phlebotomy, I'm considering going to phlebotomy school so that I can do the procedure myself as it may be the quickest option. I had a lab draw today and I am at HCT 49% and platelets 982. In addition my MCH, MCHC, MCV, RDW, and even Potassium have all gone out of acceptable range for the first time since my treatments began after diagnosis.
I started at 50 in February of this year and took months getting to 100mg. I'm now at 150 and don't plan on changing it unless my counts aren't controlled. My HEM totally agreed that slower was better to give the body a chance to adjust.
I recommend following specialist recommendations. My specialist is going to start me on Besremi, but I am not 60 yet. I see Rami Komrokji @ Moffit in Tampa. I would love to know how things go for you! Best of Luck
Some of the uncertainty we see here on dose is the novelty of Besremi. Even my specialist describes it as a sort of (safe) experiment. The wide difference in the trial doses and real world doses are one reason for this uncertainty. Since we are the ones sticking ourselves with it we do get a say. One key decision is whether we take just enough for CHR (assuming CHR is potential) , or do we go past that?
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