I am an MPN-MF patient and have been ill for 10 years. I am a follow-up person who takes meticulous notes. I found that for some MPN people, just like my situation, their total liver protein is constantly declining, and the rate is very slow. It may only go down a few values in a few years, but it is indeed declining. Eventually lead to poor liver function. This does not refer to prealbumin, nor various liver enzymes, but the total protein of the liver, showing that the ability of the liver to synthesize proteins is declining. I am concerned that this will eventually lead to liver failure.
if you also have such troubles?
Written by
merlisa
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I don't have info for MF, but I do see large variations in my total protein over the last 1-2 years, see plot. That lowest point was during my transition from HU to Besremi, I was on both. So here it seems the meds have an influence. In a quick check of Rux, (if you're still taking it) I don't find this effect on liver, have you discussed all your meds with Dr?
I used to be taken HU, but now the main medicines are Ruxolitinib and short acting interferon. I found that no matter what medicines intervention, the total liver protein showed a slow downward trend, which may be related to the disease. I have no idea on it. Doctors let me try to take some medicines on Hepatoprotective drugs now. I just start.
It is surprising that you are receiving short action (non pegylated) interferon (IFN). Current practice favors long acting pegylated types for lower toxicity, including for example effects on the liver. Has you Dr explained the reason for the IFN Dr gives you?
Are your other liver numbers ok? I am taking NAC supplement (N-acetyl cysteine) with Dr agreement. NAC is known to help with liver, but one can't say it's actually useful for us. But could be worth asking Dr about.
I already have a long time to use interferon (IFN), including pegylated and non pegylated. I found that the metabolism of pegylated interferon will bring a metabolism problem. It will make you be forced to take some medicines for liver protection. (I means the indicators of those enzymes.) The non pegylated interferon does not have this problem. Although the frequency of injection is much higher, I still have Ruxolitinib, so my non pegylated interferon is not as much as injected mentioned in the original required in the manual.
Here, the liver indicators are only involving enzymes, not include protein, total liver protein etc. My enzymes indicators are good.
Now, I'm trying to take the liver med called "Compound Glycyrrhizin" tablets. It is a compound agent, an active product extracted from the licorice. It has a certain effect of protecting the liver and is often used in patients with chronic hepatitis to improve the abnormalities of liver function. and it can reduce galcopan aminotransferase, promote bilirubin metabolism, retreat yellow and detoxify, restore liver cell function, prevent liver fat degeneration, reduce collagen fiber hyperplasia, prevent liver cirrhosis.(copy from maual)
Look forward the results. And NAC you mentioned, I confirmed in the web, it seems not only a simple med for liver. I will continues focus on this med. That may a good drug for us.
have had groin pain fir a year couldnt find issue ct determined kid et stone stuck in ureter and als a lesion on. Liver diagnosed last year jac 2 pos nothi g showed i. Ct in nov 21 os ultra sound may 22 but definitely 7 22 fou d bith stones been remived finally and finally decided to start hu as many high rIsk factors age clots w
Etc. Any body else experiencing situations any correlation?
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