HCT Jumped 3%. : I haven't had to have a... - MPN Voice

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HCT Jumped 3%.

russkatt profile image
11 Replies

I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me to go 75mcgs. My liver function and BUN are a bit elevated. I'm hoping this stuff kicks in and goes easy on my liver.

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russkatt
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hunter5582 profile image
hunter5582

If the increased HCT is consistent then a bump up in dose or a venesection would be indicated. It is your call on which is preferable. It is a risk/benefit analysis you have to make based on your treatment goals and risk tolerance.

The interferons can affect liver function. Though I am on a low dose of Besremi (150mcg), my LFTs were 3x/Upper Limit of Normal. My Integrative Medicine doctor recommend Milk Thistle Extract (Silymarin), which returned my LFTs to the normal range. It is important to consult with a medical professional knowledgeable about complementary health interventions when considering these interventions.

Wishing you all the best.

russkatt profile image
russkatt in reply tohunter5582

Thanks Hunter, I will increase my dosage of Peg and follow the blood work. I just want to make sure I am taking the lowest "effective" dose as possible. I knew I might be setting myself up for venesection, but that is the consequence of starting at such a low dose.

Minify profile image
Minify

Hi Russkatt, I’m in the same situation. I stopped HU and started Peg 5.5 months ago. Since then, I’ve gradually increased the Peg (45 every week, 45, 67, 90, 135, and now 153). My platelets and HCT numbers have steadily risen and are now back to where they were prior to any treatment. So, the Pegasys hasn’t kicked in yet. It’s frustrating, but I’m determined to stay the course, as I’ve been told Peg can take awhile to work (some in this forum have said 9 months to a year!). I am prepared to go to the full dose. The benefit of the slow titration is that I’ve had no negative side effects from the Peg, except transient mildly elevated liver enzymes after one of the dose hikes). Liver enzymes are normal now. I feel fine.

Hang in there. I am.

russkatt profile image
russkatt in reply toMinify

Thanks for sharing. I guess I will just have to be more patient give it a chance to kick in. I definitely feel better on Pegasys than I did on HU. I will hang in there! Please keep us posted on your progress and I will do the same.

Aloha, Russ

Island-Lady profile image
Island-Lady

I started on a low-dose of 0.25 of pegasys and it took almost a year for it to kick in. My platelets did go up for quite some time. They have steadily gone down over the last few months. I slowly raised my pegasys dosage to 0.50, and now 0.45 and my platelets continue to go down. My oncologist and I are very happy with the results. Mainly I am so happy that I really feel like myself on Pegasys. I started on a low-dose because I react very strongly to medication, and I raised it every few weeks or more as I could tolerate it.

Of course everyone is different and it seems that most people can tolerate a much higher dose then I can. It was very helpful for me to know that it can take up to a year so that I didn’t get too worried when my platelets went higher.

I wish you the very best

Jamesxyz profile image
Jamesxyz

Hi,

Do you have PV?

russkatt profile image
russkatt in reply toJamesxyz

Yes, diagnosed in 2019.

Jamesxyz profile image
Jamesxyz in reply torusskatt

Ok me too.

Just wondering why you opted for pegasys and not besremi.

russkatt profile image
russkatt in reply toJamesxyz

I wanted Besremi but my insurance said I would have to go through a period of time on HU and then PEG before they could consider it. So I am stuck here for now. It took almost 8 months to get them to approve PEG. It's all about the money.

Jamesxyz profile image
Jamesxyz

That makes no sense.

Your in the US correct.

I'm in the US and on medicare, I was immediately approved for besremi.

However for now sticking with hydrea, since it's working great

russkatt profile image
russkatt in reply toJamesxyz

I am in the US. That is interesting. Maybe I need a new insurance provider (UHA).

Even my doctor told me we will have to go through the standard protocols before they would approve a "new" medication. I know it was approved over 2 years ago, but that is their argument.

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