Getting to the point where I need to make a decision whether to start Besremi. Just had a CBC yesterday & my Platelets continue to rise. I used to be in the middle 500's & yesterday was 660 (after recent 603, 634, 648, 645). I realize compared to others at 1.5 million I am still low but the trend keeps going up. Hematocrit not bad at 43.6 & Hgb 12.8, WBC 11.5, RBC 5.79. Last phlebotomy was 3/24 which makes it almost 10 weeks since I had one which is unusual as I normally need one every 6-8 weeks.
Have a couple (more) questions for those on Besremi;
Do you continue with baby aspirin?
Do you need to avoid the sun as with Hydroxyruea?
Have you ever completely skipped a dose & waited a additional 2 weeks to take it (like you were out of town & forgot it). If so what happened?
How long did it take to get platelets in normal range?
Thanks for your help!
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wateron
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You will hear from others who are also on Besremi. On the whole, I have found it to be both more effective and easier to tolerate than hydroxyurea. Many of us have found this to be the case but not all. Some tolerate HU better. One of the biggest differences is that Besremi has the potential to be disease modifying in a way the HU cannot.
Regarding your questions.
Do you continue with baby aspirin? Yes
Do you need to avoid the sun as with Hydroxyurea? No - no more than anyone else.
Have you ever completely skipped a dose & waited a additional 2 weeks to take it (like you were out of town & forgot it). If so what happened? No. You do not want to skip a dose. Down the road you may actually go to a once/month dosing. You only have to take it every other week so it is easy to plan for. It is also easy to travel with.
How long did it take to get platelets in normal range? I actually started on Pegasys before switching to Besremi. I was ranging between 700s - 900s. It took about 8 weeks to get platelets within reference range.
You did not ask about erythrocytosis, which is actually more important to control than thrombocytosis. Note that one of the reasons your platelets may be creeping up is due to the phlebotomy-induced iron deficiency. This is a common reaction. It is much more important to keep your HCT within the goal range for your gender than it is to keep PLT below 400. If you stop the phlebotomies and opt for Besremi only, know that your HCT will creep up over time as your iron levels restore themselves. This can require an increase dose of Besremi. Or more phlebotomies.
Hope that helps. If you decide to move forward, welcome to the Besremi Club.
Thanks for the reply! Just curious are you in the UK, if so your up pretty late! BTW currently I'm just taking baby aspirin with phlebotomy. When reading all the precautions with Besremi it seems you have to monitor yourself with a lot of tests while taking it. No doctor in my health plan has anyone on it but there are some people on Pegasus, I would be the first.
I am in the USA - Harpers Ferry, WV. I was the first patient in the MPN Clinic at Johns Hopkins to start on Besremi. There are more now. The docs are pretty much just applying their previous experience with Pegasys to Besremi.
We need to be closely monitored any time we start a cytoreductive medication. Standard protocol for hydroxyurea is every two weeks. The same is true with Besremi. It takes some time to get the dose right and you do need to monitor of efficacy and adverse effects.
I have been reading some of your other posts & I am impressed by your knowledge of PV. I had to look up a lot of the medical terms you used as I hadn't heard of them before. I have another question concerning platelets. As I said my platelets are currently at 660 which I thought was high since the accepted range is 140-400. But when I read comments like from mfh7 below where his were 1500 & now down to 750 I'm thinking maybe mine aren't so bad. Here I am worried about a heart attack or stroke with my 660 & people are walking around at 1500. What is the actual concern with platelets as long as the hematocrit is within range.
The answer to your question is complex and can vary by the individual. Some people will remain symptom-free with platelets in the 600s but others will not. There is not a linear relationship between platelet levels and risk of thrombosis. There is a linear relationship between platelet levels and risk of hemorrhage. There is indication that reduction in risk with thrombocytosis may be more related to the delta (degree of change) than to an absolute number.
There is a clear relationship between erythrocytosis and risk of thrombosis. The convention is to use HCT as a rough measure of erythrocytosis. The goal is HCT<45% for males and HCT<42/43% for females. This is because there is a clear relationship between elevations in HCT above goal level and risk of thrombosis for people with PV. In addition, the hyperviscosity increases blood pressure, which is another risk factor.
In sorting out what all of this means, it helps to understand the composition of blood. The bulk of blood is plasma. HCT is the percentage of blood that is RBCs. The total of platelets and WBCs is called the buffy coat. which is about 1% of total blood volume , even when you have thrombocytosis. If you have HCT=45%, then plasma = 54%, and total WBC+PLT = 1% of total blood volume.
One of the major issues we face is that with MPNs the blood cells appear not to behave normally. There is evidence that the blood cells are extra-sticky. More likely to stick to each other and to interact differently with the vascular endothelium (lining of the blood vessels). This is likely why we experience microvascular issues like erythromelalgia and migraines. Controlling the behavior of blood with blood thinning medications and reducing hematocrit to goal levels has clear benefits. Reducing platelets may also have benefits for high-risk PV, but there is not a clear goal number that is a target (but 400 is often used). It may have more to do with where the PLT started at. Hopefully we will get better evidence on that in the future.
Thanks for the very thorough answer. I’m wondering if you work in the medical field as your knowledge is extensive concerning PV. Still haven’t decided if I will start Besremi as currently I have no symptoms other than what my CBC tells me. Difficult decision!
Thank you for the kinds words. My background is actually in clinical psychology. I am really just an average guy with PV who decided to get educated about MPNs so i could manage the PV more effectively.
Regarding the decision to start Besremi, it really depends on what your treatment goals are. At age 75, you are considered high-risk. In making the decision you have to decide which risks you prefer to take. Risk of adverse effects from Besremi vs risks of treating PV with phlebotomy-only. You also have to consider quality of life issues. Which treatment plan provides the highest quality of life based on your definition. Finally, there is the issue of length of life - progression free long-term survival. The evidence is that Besremi is the one treatment that is potentially disease modifying. is this something that is a priority for you? That answer is not the same for everyone.
I transitioned from HU and so far bloods remain in range on Bes with doses ~70-80 mcg. I'll know the latest in two days. I hope to increase the dose soon.
A distantly related issue to skin, on HU my hair thinned, on Bes it returned to its normal old guy state.
Interferon (INF) can be slow to control HCT while experience here shows faster effects on WBC. In fact your WBC could quickly go to the low range on Bes, my Dr says that is normal.
As Hunter says, INF has potential to improve the course of the disease, so if you and Dr agree to start, it should be a positive for you. But we are all watching the various side effects as we continue our journey. I feel reasonable side effects are worth the potential benefits of this therapy.
My blood counts were almost identical to yours when I started Pegasys interferon 6 years ago. I consider it a disease reversing drug because over a 2 - 3 year period my PV symptoms largely vanished (dizziness, occular migraines, tiredness, easy bruising, burning feet, red hands, face & eyes, etc.) and I felt like a normal person again. Phlebotomy intervals were greatly extended so my iron levels improved to normal. I tried Besremi interferon for 2 months, but found the side effects much more unpleasant than Pegasys so I went back to Pegasys. So if you should try Besremi first and find the side effects borderline intolerable, you might consider trying Pegasys before giving up on interferon entirely.
Hi—has anyone had emotional reactions to interferon? I’m prone to depression-anxiety and have been afraid to try interferon. I’m on Jakafi now, which is going to cost $$$$ on Medicare. Thanks.
I’m 74 and rolled the dice with Besremi. Bad results. 6 doses and kidney started to fail. Admitted to hospital along with horrible edema. Infusions of Lasic and albumin. Entering hospital now for second time. Recommend starting at No more than 50mcg. If blood work looks back to range then stop Besremi until out of range again. Everyone is different but go very slow with titration to see how it affects you. For me it was life threatening and continues to be. I’m hoping over time kidneys come back. If not i am history. I’m sure I’m an extreme case. Only time will tell. Best of luck.
Been on Besremi for four months. Still taking baby aspirin. Platelets went from 1500 to 750 in two months and still declining which is good. Besremi has controlled my hct and so no more phlebotomies so far which has been awesome. Ditto on Hunters comments. Hct control without regular phlebotomy is the primary goal. All in all I am glad I chose Besremi as my first drug for pv so far. Figuring out the Besremi dose seems to be the hard part. I am shooting for the minimum dose that will keep my hct below 45. Right now that’s 250 but hope to decrease again depending on next labs. Started at 100. Only real side effect is itchy skin after shower which goes away after 30 minutes. White count has decreased but still within lower range of normal. Best of luck!
Your platelets alone are quite low and most expert haems would not treat the until at least 1 mil unless you have other health issues that may change that view. It’s rare for someone to come off Asprin just because they start meds but as Maz mentioned best discuss all this with your Haem. I don’t know if you have discussed the subject but it may be worth asking if you are eligible for Besremi , I don’t know how hard it is to get in UK, I understand it’s quite expensive, maybe other UK may want to chip in. Your counts in themselves look good so no great rush to decide unless you have other health or age concerns.
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Besremi and Rux Combined
Still off Besremi
Besremi was approved for me by the insurance provider
