Still off Besremi

[Barbiebreath]

Had my liver sonogram, actually a full comprehensive abdominal sonogram last week.

The findings were good. Everything measured fine and looked fine except that my liver was a bit enlarged and so was my gallbladder. They were both smooth and no signs of tumors or stones or sludge. (Consistent with fatty liver which I’ve been diagnosed with before.) I was never told what they were looking for specifically but my doctor sent a note cheering the fact that there were no blood clots.

I thought I would be put back on Besremi but no. Now there will be a consultation with a liver specialist. Not sure if it’s the docs consultation or mine. 🫤 In the meantime my liver enzyme numbers continue to go down but platelets and hct going up. Nothing scary but still.

. I think I’m most worried that if I keep refusing the Besremi from my specialty pharmacy that they will take me off the list. I really wanted Besremi to work for me. All the other choices are not ones I prefer.

I really like my doctor and love UNC Chapel Hill Cancer Hospital. I suppose she is just very thorough and conservative. My numbers are not alarming perhaps that why it’s no hurry on her end. I’m a take it by the horns kinda girl so I am trying to be patient and go with this flow.

I know a lot say they itch when taking Besremi. I had not been itching but now I am.

My next appointment with them is coming is February 15.

Just sharing my story.

[hunter5582]

It sounds like the MPN doc is being very conservative and careful. Per the label for Besremi, the level of elevation for liver enzymes that are a concern are 5x/ the Upper Limit of Normal. There are, of course, other factors to be considered too.

accessdata.fda.gov/drugsatf...

My last CMP showed ALT=157 and AST=94. We did not change my dose, but are electing to not increase the dose even though my HCT is above 45% now. The plan is to do a phlebotomy and recheck the numbers in a couple of weeks.

It really makes a huge difference to have a MPN Specialist and care facility you like and trust. Glad to hear you found that.

.

[PVmom_79 in reply to hunter5582]

Can I ask what Besremi dose you are at? I’m at 225 mcg and my ALT and AST look fine. Thanks!

[Barbiebreath in reply to PVmom_79]

100mcgs- I’m jealous.

[PVmom_79 in reply to Barbiebreath]

I’m on Hydrea twice a week, too. My hematocrit was 45.5 last week though. It’s helpful to have others to talk to all of this about. No one else understands what we’re talking about or how it feels to have a MPN.

[hunter5582 in reply to PVmom_79]

I am currently at 150mcg. We each respond differently. I consider myself fortunate to have had such a good response to a low dose of Besremi. Hopefully the LFTs will settle down.

[PVmom_79 in reply to hunter5582]

That’s great!

[EPguy]

On the pharmacy not renewing your Rx, I go thru this every time since I order too infrequently. I asked them to not auto send nor call all the time about it. So it goes dormant. They require a new Rx from my Dr and insurance check each time, aggravating but otherwise it's not been a problem.

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As Hunter says, your Dr is being esp conservative. How is your HCT? If it's well over 43 then your Dr is trading one low risk (livers well in the allowed IFN range) for a possibly higher one (HCT high).

I had Usound and MRI for liver weirdness. There's a short circuit in certain blood vessels, but they say no worries. Liver numbers are ok, but as Hunter notes there is a lot of wiggle room if the liver is otherwise ok.

This from the familiar reference is one condition that is not ok:

"Liver enzyme elevation with concomitant bilirubin elevation, or other evidence of hepatic decompensation" (decomp is other obvious liver troubles)

us.pharmaessentia.com/wp-co...

But your bilirubin is fine (as of your last post) so this does not apply and you're reasonable to ask Dr's thinking.

[Barbiebreath in reply to EPguy]

HCT is 43.3. Not bad but I will stop in and get a phlebotomy this week. I could voice my concerns through my online patient portal but may just wait until February. I would like to know her thoughts.

[Elizka]

Hi there, glad to hear liver is cleared. I agree with Hunter and EP guy, your doc is doing this job. I do hope you can get back on Besremi soon.

[DiveGoddess]

Barbiebreath, hoping the Liver specialist finds nothing more. I am so glad you shared your story. I am starting Besremi today. I am interested in knowing next step you and your team decide going forward. Best of Luck.

[C_Anne_Orange]

Hi - thank you for posting about the liver issues. I’ll be looking at that myself. I got my PV JAK2 positive Dx in August 2021 and started on HU in Oct 2021. Just started Besremi on Dec 29 at a low dose 2nd dose this week and still also on HU also. Probably have to have another phlebotomy after today’s CBC results. I’m a decade older than you and feel very lucky to have been sent to Dr Reeves at UNC. I do have a lot of confidence in her and the whole MPN Staff there. I’m wishing you the best and hope you are able to be back on Besremi soon!