ET JAK2

[Smoothie2020]

Happy Wednesday everyone! I take hydroxyurea and just had labs with my primary doctor. Liver and pancreas enzymes were elevated. My first thought was could medication be causing this, but I have been on it a couple of years now with no issues. I had abdominal scan everything was fine, so now I’m going for CT scan and was told to follow up with gastroenterologist. Just wondering if this could be caused by hydroxy. Contacting my hematologist today as well.

[Solyesh]

Elevated liver enzymes are a rare but known potential side effect of HU. Sounds like you are on the right path checking with all the relevant medical professionals. Good luck!

[hunter5582]

The short answer to your question is that hepatotoxicity and pancreatitis are both known potential adverse effects of HU. Some adverse effects take time to manifest and are seen on long-term use. That is not to say that this is an HU adverse effect, just that it is possible. Follow up to assess what is going on is certainly the wise course of action.

I experienced an elevation in LFTs using Besremi, 3X/upper limit of normal. This is a known Besremi adverse effect. My Integrative Medicine doctor prescribed a Milk Thistle Extract that is used as a liver protectant for people on chemotherapy. This intervention returned my LFTs to an acceptable level.

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

[Smoothie2020 in reply to hunter5582]

Thanks Hunter. Waiting to hear back from my hematologist. I was reading about milk thistle supplement earlier today. I was looking at purchasing otc but you had a prescription so I wonder if that’s better.

[Smoothie2020 in reply to hunter5582]

I was also considering a functional doctor but I see you go to an integrative med dr. I’m going to check into that. Thanks

[hunter5582 in reply to Smoothie2020]

Functional Medicine and Integrative Medicine are two very similar disciplines. My doc practices both. I would be comfortable consulting with either about complimentary health interventions. Both would be more knowledgeable about the use of supplements like milk thistle extract.

The formulation I am using does not require a prescription to buy. I am using Pure Encapsulations Silymarin, 2 caps/qd. The issue with supplements is that there is huge variability in quality. That is why I go with formulations recommended by a knowledgeable medical professional.

[Luthorville in reply to hunter5582]

How many mg are you taking per day? How many times per day?

[Jamesxyz in reply to hunter5582]

With the milk thisle what are your LFTs now, ALT and AST?

[hunter5582 in reply to Jamesxyz]

Before the milk thistle extract, LFT were 3X/ULN. Now they cycle a bit between normal limits and just slightly elevated. The interesting thing is that my LFTs dropped significantly after just a few weeks of using the extract and have stayed in acceptable limits ever since.

[Jamesxyz in reply to hunter5582]

Thanks.

Unlike other treatments the IFNs effect the liver. Do you know if there have been

any studies on long term IFN use and liver issues?

[hunter5582 in reply to Jamesxyz]

The possible impact of the IFNs on the liver are well documented. Elevations in LFTs are fairly common. the iFNs ae highly active agents in the body that can stimulate and/or trigger inflammation in the liver. This impact is usually transient and will respond to changes in the treatment plan. While there can be other hepatic issues, they are not common at the doses we use; however, monitoring LFTs is an important aspect of using IFNs. The Besremi label has very specific instructions about elevations in LFTs and when dose modification is indicated. accessdata.fda.gov/drugsatf...

All of our treatment options are a balancing act. We have to weigh the benefits against the risks/adverse effects. I did not get concerned until my LFTs reached 3X/ULN. The milk thistle extract stabilized the liver response and returned the LFTs to an acceptable level. Along with my treatment team, I do not worry about mild elevations in LFTs, That is just to be expected. I do favor "be kind to your liver" - especially when on a medication that tends to irritate it. Limiting exposure to other liver irritants seems prudent.

All the best.

[Jamesxyz in reply to hunter5582]

Thanks

That's a great explanation.

When you mention 3x UL, was that both ALT and AST?

[hunter5582 in reply to Jamesxyz]

Yes. and Alkaline phosphatase too.

[william-Indo]

Maybe you could take milk thistle 1 cap BID to protect your liver.

If persist, talk to your doc.

You may need to change your treatment.

Cheers

[MWxxxx]

Hi. I also had raised liver enzymes on hydroxy. I have recently switched to Rux and on my last blood test my liver readings were normal (1st time in a couple of years). Hoping it will hold and maybe was down to the Hydroxy.

[Jamesxyz in reply to MWxxxx]

Hi,

That's interesting. How long were you on Hydrea and what dose before the

enzymes shot up?

Thanks

[MWxxxx in reply to Jamesxyz]

Hi. I can't really remember for sure. I started hydroxy 5 years ago and was on 1 x 500mg tablet per day for quite a while. It was then increased to 500mg / 1000mg alternate days. Then increased again to 5 days on 1000 mg and 2 days 500mg and finally 1000mg every day. My liver enzymes were elevated for a while, not massively but they were being watched closely. I changed to Rux because my WCC was also elevated and hydroxy just didn't seem to be able to control it. At my last appointment I was told my liver had returned to normal. I can only assume it was the Hydroxy because nothing else was different.

[Mishie14]

hi, Smoothie. My experience is the common ET drugs Hydroxy, anagrelide and peginterferon all cause elevated enzymes. I eventually was referred to liver specialist. Two months of no treatment and enzymes returned to normal. Started peginterferon and enzymes went up again. Found on this site references to milk thistle and told hematology doctor I wanted to try it. I considered it low risk with only good benefits to help me. She agreed and I started low dose 175 twice per day. After a couple weeks and no negative side effects but with slow enzyme reduction I increased dose to two 175 twice per day—doubled—and the enzymes started moving down nicely. I take the same dose today. I consider it a maintenance drug now. I get biweekly blood tests so easy to monitor and confirm milk thistle works for me. May not be the same for others and there are more causes to high enzymes than ET drugs. Be informed and check with your care team.