Eight months: Besremi Update

[Elizka]

UPDATE: 9/12/2022 two weeks after previous CMP. Besremi dose at 150mg.

My ALT was is the normal range at 31. It dropped nine points.

As ET guy suggested the last ALT result of 41 could have been an outliner. Or, while I don't drink alcohol that often I did have 2 drinks the week I did the previous CMP. For me, it looks like my liver can deal with Besremi but not alcohol and Besremi.

My hematocrit also dropped a bit to 40.9. No "baby" phlebotomy since June. The Besremi seems to now be having an impact on my hematocrit, thought not as pronounced as WBC, PLT, etc.

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Eight months on Besremi. I have had two "baby" phlebotomies, one in June. HCT is 41 and I keep it at 42 so I will schedule another phlebotomy next month, if it goes up.

For the first time my ALT (Alanine Transferase) is not in range: 41. I haven't discussed it yet with my HEM. Last month it was 29.

UPDATE: My HDL cholesterol was low for the first time. The "good" cholesterol: 35. It has always been over 45.

[EPguy]

Great progress, Bes is doing its thing steadily.

How small was the phleb?

The ALT of 41 is in range for some providers, we've posted on the large variations they use, great example is mine allowing up to 70. What is the max at yours? Some members have seen this improve over time. In any case, the label allows for 3X the max, so we have some headroom on this one.

[Elizka in reply to EPguy]

Hi there. This is good to know as I was surprised and concerned. I have a drink maybe once a week or less.

I did see the Europe info said 3x the max. Does that mean the liver isn't at risk? Not sure what my HEM will say or his max. Is this what you asked?

At Hunter's suggestion I asked for 250 ml taken out during phlebotomy.

I think when I do have another I'll get the full one. I'd rather go in once and then not go back for a while. The good news is that my HCT did drop from 41.6 to 41 and this is without a recent phlebotomy? Maybe Besremi is starting to have an impact on my HCT.

[EPguy in reply to Elizka]

Is 41 the max of range your provider lists?

[Elizka in reply to EPguy]

I don't know. Where would I find that?

[Elizka in reply to EPguy]

This is all I see: Alanine Transferase (ALT) 41 U/L <=33 U/L H

[EPguy in reply to Elizka]

That likely means your provider uses 33 as a max, that is less than 1/2 of what mine uses, it is surprising the variation.

[Elizka in reply to EPguy]

I thought so. When did yours start to increase? Has your HEM suggested you lower your dose?

Prior to this last test, my HEM suggested I very slowly increase my dose to 200 mg--over 3 months or more. I think I'll go back to 150 and stop increasing it. That is the only difference between my last CBC and the current one was a slight uptick on the dose.

[EPguy in reply to Elizka]

My ALT has actually been well behaved so far. This is a plot, which shows the limits my provider uses. Using the limit of your provider I would be not so far from the limit with 28.

The extra low one was on HU, I didn't know it could do that.

I am having discussion with Dr about dose, he also wants more.

ALT

[Elizka in reply to EPguy]

Here my my graph. Started Besremi Feb this year.

ALT graph

[EPguy in reply to Elizka]

You've got some conflicting info on the range. This plot shows a max allowed of about 53, while the text you have shows Max 33. On this plot, you're well in range with room to spare. It is increasing some, did you up the dose recently?

[Elizka in reply to EPguy]

On my last injection, almost two weeks ago, I upped it to 155-ish. Up from 150.

[EPguy in reply to Elizka]

5mcg is well in the error of that syringe, I find it hard to get that accuracy. But my injection procedure is trickier. Anyway it doesn't seem likely the dose change was a reason for the results. You'll get a better idea after the next CMP, the high result could be an outlier. Anyway it's no worry at all with the limits your provider shows in the plot.

[Solyesh in reply to EPguy]

The differences in reference ranges are quite interesting. Our lab uses 37 as top of WNL for ALT

[EPguy in reply to Solyesh]

That is consistent with the lower tolerances I've found in searching. What are we amateurs supposed to figure with such wide guidance? My take is these values are fairly loose, as suggested by the high liver range allowed in most IFN use.

[EPguy in reply to Elizka]

Looking at phlb and the Besremi (Conti-PV) study I discussed with the CHR point plot recently, they describe success as:

<<-Hematocrit < 45% without phlebotomy (at least 3 months since last phlebotomy),>>

You're almost at 3 months since your last one, so even using the stricter 42 HCT you may already be at CHR on Bes.

[Elizka]

Can I ask why your injection procedure is trickier? My husband gives me the shot and he agrees it is hard to ever inject an exact amount. Thank you for the insights!

[EPguy in reply to Elizka]

The standard procedure has the 1st step being "ejecting" the right amount to throw away. That is supposed to leave the intended dose in the syringe. This is not so easy, but at least the syringe is in a convenient place to watch as the dose it set. My Dr's procedure has me "injecting" the right amount, I have to watch as it's stuck in my body and plunger is moving. It seems your husband is doing a similar method.

I've gotten good at it, but +/- 5mcg would be hard to do. Dr from the start said our doses don't require that much precision.

With either procedure there is always some left when the plunger hits bottom, I assume it doesn't count for the dose on marked on the side.

[SoledadBarcelona]

You have to check with the cholesterol the triglycerides. This is very important for us. A phlebotomy to get up the HCT? Have never read about it. Check it. The phlebotomy usually is to lower the HCR. You have the kidney biomarkers no in range. Check it. What amoung of Besremi are you taking? I have been taking 100mcg for 13 months. All in range, until now.

[EPguy in reply to SoledadBarcelona]

Have your blood counts recently gone out of range? Which ones have done so?

Are you still on 1 dose per two weeks, or once per month? Bes can usually go to the less frequent dose after about a year.

I recently posted this thread, I don't think I got your results in there. I can add it you'd like, to the plot in the 2nd link here.

healthunlocked.com/mpnvoice...

healthunlocked.com/mpnvoice...

[SoledadBarcelona in reply to EPguy]

Yes, I usually check my blood count once a month. I take 100 mcg of Besremi each 14 days. I have to check my genes and after reconsiderending my doses. But, according to Dr Spevak and Dr Gisslinger these doses we have to keep all time we can sopport it. But, nothing clear with Besremi, I think.

[EPguy in reply to SoledadBarcelona]

Are your blood counts (PLT, HCT, and WBC) all in range on Bes?

[Jamesxyz]

Hi, Sounds like you are doing well.

Have you had any adverse reactions from the besremi?

Also any explanation why your MCV is low?

[Elizka in reply to Jamesxyz]

I wrote a post a few months back about an uptick in migraines that I believe where due to Besremi. (Though migraines aren't in the Besremi literature, 39% of participants in the study had headaches.) And, these were different types of migraines...no warning, and streaks of them for 4-to 5 days. With Nurtec and Emgality medication migraines are gone.

Other than that, no adverse reactions at all.

[hunter5582]

Looks like good news on the whole. I like the idea of a baby-phlebotomy as an option to consider if needed.

I had a similar small bump in AST/ALT. The hematologist and MPN Specialist were both not concerned even though they numbers were a bit out of reference range. The numbers would have to be way higher than that for it to be a concern. The MPN-doc said someone can get bumps like that just from having a couple of drinks.

Please let us know how it all turns out after the next appointment.

[Elizka in reply to hunter5582]

Hi there. I didn't expect to see you here in a community for a few weeks. I hope your holiday is amazing.

Thank you so much for the insights; it makes me feel better. I typically only have a drink on Fridays, but I did have two the week of the test. I guess I'll skip alcohol completely and see if that has an impact. it isn't good for you anyway.

My Ferritin was still low, but for the first time in years, it didn't have a flag on it!

Ferritin

[hunter5582 in reply to Elizka]

Always have time for a friend. Glad to see you are on a good trend,

The holiday is indeed amazing. First day of the cruise found me in Zadar, Croatia. Great tour of the old-town followed by a gourmet French dinner at the Chef's Table. I paid for an upgrade that was totally worth it. Tomorrow I am off to Šibenik for another great day. Tomorrow's repast will include an Italian dinner at the Chef's Table,

It has been a great reminder that despite dealing with a MPN, COVID and all the other rot - always find a way to have some fun. We all need it.

All the best my friend.

[PhysAssist]

This is just a general reply to the concept of variation between labs.There are any number of different ways and means to test for almost any specific laboratory finding, and labs [or more accurately, their parent corporation] decide which ones they will use based on a whole bunch of factors- some being cost-related, and others being their relationship to the manufacturers of the equipment and reagents used in obtaining the desired results. Usually, there is no specifically right or wrong way- as long as the lab is certified [in the US- it's by CLIA], which is pretty much always the case- if your health insurance [or other guarantor] is willing to pay the lab.

This means that you should try to stay with one particular lab entity [although you can use whatever draw stations they own] as much as possible, so that the results are always in direct comparison.

Where I live, we have 2 very large health systems in direct competition with each other, and over the years, my health insurance has vacillated between covering one or the other at different times [my fault for changing jobs mostly], but this fact has required some care with interpretation of results whenever the changeovers have occurred.

Then there's this:

Variation in Laboratory Reports: Causes other than Laboratory Error

ncbi.nlm.nih.gov/pmc/articl...

[Elizka in reply to PhysAssist]

Thank you for the information. The good news for me is that I only use the University hospital/lab where I get medical care for all blood work.

[PhysAssist in reply to Elizka]

Hi Elizka,Got it, but what I also found interesting in the article was the concept that even using the same lab, if you had the same study done again on the same day, the results wouldn't [necessarily] be repeatable.

Best,

PA