Allelle Burden up a bit

[MrsBerri]

Hi,

I read this board regularly and appreciate everyone's input. I am 57 and was diagnosed with PV in June 2022. Since then, I have been on Besremi 350mg every 2 weeks. I tolerate it well. I noticed that my Allelle Burden went up (11.7 in 6/22, 1.7 in 8/23 and 2.4 in 2/24). I noticed that my HCT is up to 42.7 in January and had been declining. Not sure what to make of all this. My doctor said that maybe we would take a break from the meds after 2 years but I don't think I trust this input. I don't feel stable with my numbers and was disappointed to see the Allelle Burden go up too. I will talk with her tomorrow (we check in about every 3 months via phone). Just wanted to share my latest. I feel okay; a bit depressed at times, a bit of insomnia and a bit of tingling in one hand... but good other than that.

[hunter5582]

Are the numbers you list (11.7 in 6/22, 1.7 in 8/23 and 2.4 in 2/24) the absolute numbers or how much VAF wen up each year. If they are the absolute numbers than I would not worry about the change from 1.7 to 2.4. It does not seem like a significant change.

HCT = 42.7 is still well within the target range most use, though some use 42% for females. My HCT gradually rises throughout the year until I go in for my annual phlebotomy. I am limited to a 175mcg dose due to side effects. Assuming you are not using any phlebotomies, then it is not surprising that HCT would rise as your iron levels get better over time.

Suggest you discuss your options with a MPN Specialist. I would agree that continuing on Besremi makes more sense than taking a break from it. The options would include either upping your dose or using the occasional phlebotomy to stay at your target HCT. If you feel the depression and insomnia are related to the Besremi, the occasional phlebotomy may make more sense. It is also an option to add another medication (e.g., Jakafi) but it is likely preferable to try one of the other options first.

Please let us know what you learn and how you get on.

[MrsBerri in reply to hunter5582]

Thanks! They are the absolute numbers (not increase/decrease numbers). I had the worst time with phlebotomies! Even getting my blood drawn is a traumatic event; I have no veins, or they run from people that want my blood I will meet with my oncologist (who I believe is an MPN specialist). I am a big fan of advocating for myself so I will not stop Besremi if I have the final say; maybe up it a bit. We will see.

[hunter5582 in reply to MrsBerri]

Glad to hear that you are a good self-advocate. Assertive patients receive higher quality care. passive patients do not. If you decide to increase dose, it is an option to do a smaller increase than 50mcg. I did my dose increases in 25mcg increments. I am currently at 175mcg.

All the best.

[EPguy]

Your increase in AB is within the accuracy of the ones I get, 1%, so that could explain the increase if yours is similar. Is your HCT increase uniquely large, or has it fluctuated before like this?

I've posted on the known effect of some loss of blood response on average over time for most our treatments. On avg it occurs after a few years or so. Same for AB on IFN, on avg it has gone up slightly after about 5 years. But a single result is not enough to know whether these are happening after three years in your case.

Why has your Dr suggested stopping? If response is declining it's more intuitive to at least keep at it or increase dose.

But the mental health issues and tingling are a concern if they correspond to the IFN, these may be indicators of the black box warning on IFN label in this image. Tingling can be an early sign of neurological issues and you should be sure Dr is familiar with IFNs and knows about your experience. Maybe this is why Dr suggests a pause?

As Hunter says, Rux is another option to add or switch if your and Dr feel IFN is not working well enough, but as above, one test result is not usually a reason to act, but certain side effects can be.

BBox

[MrsBerri in reply to EPguy]

Thank you EPguy. I think as we saw the numbers decline, we talked about stopping Bes for a bit, but given the current stats, she said we should continue on with the same treatment. I agree. I will look at the side effects again; not sure how big of an issue they are right now. I have other hormonal things going on (ie, menopause) that may contribute to the insomnia. Not sure what the 'cold' hand/tingling is intermittently. My HCT and other numbers have not fluctuated alot to scare me. I just was hoping things were doing 'down' and not up. I will keep an eye on the side effects. I haven't really discussed them with the doctor because I didn't want her to stop the Besremi treatment.

[EPguy in reply to MrsBerri]

I had your same thought on not wanting to stop the IFN, and as a result I didn't take a warning sign seriously enough. You can read my posts Last Dose to see how that turned out. As ainslie says, neurological presentations can be an early sign of an autoimmune reaction. In most cases these worst outcomes are reversible as it says on the label, but the label also provides for outcomes like mine, a permanent life crushing event.

I also didn't think much about my history of mild psoriasis, wanting to get on IFN. I told my Dr but we didn't worry on it. Turns out that is a signif risk factor for IFN pts.

Odds are you won't share my outcome, but you are getting warnings and your Dr should be made aware and you should be sure Dr is familiar with IFN and its risks.

Here is one reference with some relevant serious events:

webmd.com/drugs/2/drug-1827...

"Tell your doctor right away if you have any serious side effects, including":

"...numbness/tingling of arms/legs...This drug may cause serious mental/mood changes that may get worse during treatment or after your last dose... menstrual changes (such as absent/delayed/irregular periods"

That last side effect has a probable innocent reason as you say.

In my case I capitalize Last Dose, it's a named event in my history.

[ainslie]

I wouldnt read anything in to AB appearing to go up from 1.7 to 2.4, both numbers are really low and AB can fluctuate quite a lot. Any worthy haem will tell you not to assume anything from one reading , its always the trend thats important over several tests. If its from bloods its important to use same lab and same hydration and same time of day.

, that can make a lot of difference.

If indeed your counts are rising and there are no other factors then from what you have written it wouldnt make much sense for your doc to suggest a holiday from the med.

However I would keep a close eye on the side effects, low mood is not uncommon and can creep up on one on Interferons. I would pay attention to the tingling and try to find the cause, if it is a autoimmune issue be careful , one doesnt want to go beyond the point where it might not be fixable. It could be unrelated to the med your on and may clear up but better to be safe than sorry.

If it turns out your counts are rising and sides are an issue then its likely Rux could be a good option. I am on Rux having had problems with sides on Peg