Have ET / JAK which treatment has been interrupted due to very high (4x) liver enzyme values. I have been on 2 mg anagrelide per day for several months with cautious results lowering platelets to 800,000. That caution allowed liver and kidneys to calm down from high values after 2 months on hydroxyurea. My Hemo doctor said it was now time to raise dose of anagrelide and get platelets down farther. After two weeks at 3 mg per day with 8 hours between each mg, my liver enzymes took off higher than ever before and she told me to stop the anagrelide and see liver specialist. That’s happening this week Friday. Anyone experienced radical liver response to ET drug increase and have to change focus? It would seem that this is not an unusual situation as ET drugs and their side effects are so strong but haven’t found anything about ways to respond to liver issues. I’ll be asking about liver detoxify supplements. Have to add that being off anagrelide for 6 days thus far has been like a dream vacation. I have energy, have not needed to take naps, no heart palps, even some appetite returned, no bone chills nor night sweats, and brain fog is gone. But, controlling my platelets are for the time being subject only to Vitamin D, low dose aspirin and blood thinner. Thank you in advance for sharing your experience and suggestions. Stay safe.
Relief for Liver?: Have ET / JAK which treatment... - MPN Voice
Relief for Liver?
Sorry to hear of your troubles. You meet the description of being intolerant to both Anag and HU if your liver values are responding that way. I was ok on HU but others here will comment.
With anag increasing liver enzymes is "uncommon" occurring in up to 1 of 100 patients:
ema.europa.eu/en/documents/...
But it seems to be not well studied.
HU is similar, having "rare" "abnormal liver function tests "
webmd.com/drugs/2/drug-1236...
For both we need to consider any pre existing liver troubles which increase the risk.
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Unfortunately PLT control most often requires "real" medicine. A 2nd option you can discuss with Dr is interferon (Pegasys). It is used for ET off label and some do well on it.
Also if you're not tolerating these 1st line treatments you may qualify for the Bomedemstat trials. You can ask Dr about it.
cancer.gov/about-cancer/tre...
This new agent is looking good for PLT control.
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On supplements you plan to look into, some of us take NAC (N-acetyl cysteine) This is actually approved in high doses to treat Tylenol overdose to the liver. So it's worth asking about. But we take much lower doses for different purpose. It's also possibly helpful for kidneys. Most of us take it for its potential anti-inflammatory benefits.
It does sound like you are intolerant of both HU and anagrelide. It may be that your liver simply cannot tolerate these medications. fortunately, there are other options.
Pegasys is the other first-line treatment option for ET. While its use is off-label, it is in common use for ET. Here is some information on that,
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Like you, I was unable to tolerate HU. I have done much better on the interferons, Pegasys then Besremi. They have been both easier to tolerate and more effective for controlling thrombocytosis and erythrocytosis. Note that is for me. We are all different in how we respond to these medications. The IFNs can affect liver enzymes. My have fluctuated between normal to 2x/max normal level.
There are other treatment options for ET that are considered second-line, like jakafi. Note that anagrelide is also considered a second-line treatment option, but some people tolerate Jakafi better. There are also drugs in clinical trials for ET like Besremi and bomedemstat.
You may want to consider reviewing your options with a MPN Specialist. Hematologists that speciaize in MPNs are better equipped to provide optimal MPN Care. Here are two lists.
pvreporter.com/mpn-speciali...
It is definitely worth following up with a liver specialist at this point to see if there is any underlying liver disease making you more vulnerable to medications.
Some docs, are not familiar with supplements, which are considered complementary health approaches. This is not something to be pursued on your own. Proper use of complementary health in the context of a serious disease requires professional guidance. If you want to consider this, suggest you consult with an Integrative or Functional medicine doctor. Here is some information on this.
balancedwellbeinghealthcare...
fonconsulting.com/resources...
excellent references, thank you. You are able to take a complex topic and make it so much easier to understand. I am feeling grateful to this MPN group for a huge shoulder to lean on. Bless you.
hi I used to be on a combination of anagrelide and Hydroxicarbomide . Maybe it’s something you could consider. Or even Peg. Good luck
I was on 17 Hydroxicarbomide and 9 anagrelide a week for a few years then Peg.
Good luck.
Fascinating. Were the two drugs ever taken together—a partnership so to speak or like hydroxy week days and anagrelide weekends? I can handle lower doses of each. It’s when the dose is increased that things start to go wrong. Thank you so much for the additional info. Stay safe.
yes they were. Id have one anagrelide a day and two days a week it would be two. I took them all together at night. It was hoped I could come off hydroxi and go solely on to anagrelide. Anagrelide was introduced but my body couldn’t cope hence the two meds.
Shortness of breathing n chest pain came out to be bcz of inflamed liver because of blood thinner.
Quick Question re. Taking Hydroxycarbamide.
BMB results 
Besremi - CBC after the 5th dose kept at 200 mcg
