Hello,
My Dr.'s office told me they are switching me to Jakofi because Besremi was making my liver enzymes too high and not controling my red blood cell numbers at a lower dose. I knew Besremi was known to cause liver enzymes to increase, but it looks like Jakofi can cause liver enzyme increases as well. Can anyone share their experience?
Also, I have read that on Jakofi the burning itchy sensation after showering will go away. That would be great!
Thanks for sharing!
I made the same switch for very different reasons. We do often see elevated liver counts with IFN on the forum. Less so with Rux. Hunter likely will reply too, he found good benefit with Milk Thistle.
What were your liver counts, the label allows for significant elevation, this is the relevant page from the label. Is your Dr using this criteria?
It seems you've been on Bes for just a portion of a year is that right? Your prior posts you started HU just 10 months ago. IFN can take a lot longer than that as seen here.
Rux is fine medicine, my mutation continues down with it. But before you switch there should be some questions for your Dr:
-Are your liver counts within the margins in this label?
-Is Dr open to supplements to address it?
-Is your Dr aware that IFN can take a year or more to control reds? (some pts use phlbs in the meantime)
Hello EPguy,
I'm not sure if my liver counts are within the ranges listed. My last ALT was 95. I don't remember when i started the peg interferon/Besremi, but it was early last year. My questions were not being answered by my local hemotologist who put me on HU so I went to a specialist at MDAnderson and he switched me to the interferon shots. They increased the dose pretty quick and then backed it down because of my liver. I asked him if the lower dose was enough to improve the allele burden and he said he wasn't sure. My red blood cells were under control but they called me this week and said they are no longer being controlled with the lower dose so he wants to switch me to Jakofi. I asked what my allele burden was and they said they would test the bone marrow sample and get back to me. They did the sample to test for the Jak2 mutation but didn't test for how much was mutated at the time i guess?
What's crazy is the itching and burning after a shower didn't start until maybe five or six months ago but it has gotten progressively worse. I was wondering if the biological changes the medicine was causing to my blood cells was causing this to happen. I asked the nurse and doctor but have not heard back yet.
Even though this itching is new the other crazy side effects have almost completly stopped. Tingling hands, uncotrolled twitching of my legs in the morning, constant pain in my abdomen. The pain in my abdomen is what made me start asking questions that led to the tests that showed the PV.
I wonder, how do you test for the mututation? Do you do a regular bone marrow biopsy to track the mututation numbers?
The label in this image calls for action if ALT is 5X the upper limit and below 3X of upper limit is ok.
So according to the label, if your lab has ALT upper limit of more than 32, (95/3) you would not need to take action. But biliruben has no extra margin, any biliruben over limit with your ALT result requires action in this label. Of course your Dr ultimately makes the judgement.
On allele reductions with low dose yes a low dose can offer all the IFN effects good and bad for some pts. I got good reductions on a relatively low dose of 140, but also a worst case outcome.
Patients' reaction to IFN varies in the extreme, some can take take the whole 500 mcg with no bad sides, some get serious reactions at the minimum. Same applies to its benefits. Some hold normal blood counts (CHR) on just 50 mcg. CHR relates to allele (VAF) burden as in many reports so achieving CHR give better odds of VAF reductions.
You say your HCT is not controlled by the IFN, we see that frequently here, it can improve with time but if your counts are rising that may suggest IFN is not trending that way. So the Rux your Dr suggests is a good option.
VAF can be measured by marrow (BMB) or blood. BMB and blood mutations can give different results, mine were quite so. So you should not compare results between the two methods. For regular monitoring blood is the practical and more comfortable way. So you should request this test at the next opportunity. You're right that there is a "qualitative test, (is there any Jak2 mutation?) and a quantitative test (how much is it?) Even the second one has different procedures as the mutation gets very low.
Aquagenic pruritus (itchy shower) is a classic PV symptom. Itch can also be an IFN side effect as you suggest. Rux is quite often a great treatment for that, more often so than IFN from posts here. So you may find relief there.
The previous symptoms you describe, "tingling hands, uncontrolled twitching of my legs in the morning", were these before you started the IFN?
You don’t need a BMB to test for allele burden. If that is all they are looking for there is a blood test for it-
BMB will reveal other information, however.
pmc.ncbi.nlm.nih.gov/articl....
Furthermore, the JAK2 p.V617F allele burden measured in PB and BM were equivalent by linear regression analysis (R2 = 0.991; P < .0001). We therefore conclude that PB is a reliable source for testing for the JAK2 p.V617F mutation and quantifying its allele burden in patients with MPN.
Hi, I have no experience of an any issues with liver enzymes or Besremi but I have been on Rux for the last 3 years and Hydroxy for 2 years before that. The Rux definitely cured the itch instantly.
Great to hear! I'm looking forward to that and not having to pack an ice chest when i travel to keep the Peg shots cold.
By the way-try over the counter Cetrizine allergy relief for the itch. Very effective. 300 tablets are cheap.
my experience with Rux is it hasn’t increased liver numbers, I am on 22.5+20mg , it usually gets rid of the MPN itch which can be a game changer.
It seems that combining interferons with alcohol can increase liver numbers, reducing or eliminating alcohol can for some bring the numbers down, I note after moderate drinking on a 5 week holiday my liver numbers were up slightly but well within range.
Interesting about the alcohol. I have mostly given up alcohol because of the impact on my liver in combination with these drugs. I have no idea whether it matters and I’m not sure it has been studied. Both just seem to process through the liver -
I have pretty much given up alcohol as well. That and warm showers!
Do you know how high you ALT and other liver enzymes were?
My last two ALT results were 95 and 97. Each were a month apart.
Yeah that is definitely elevated. Have you considered a lower dose of Besremi in combination with Jakafi? They do work on different things and may be complimentary to one another- Jakafi allowing the Besremi to potentially work more effectively at a lower dose. I’m on both now (itch gone).
Hello, I was on pegasys before and it a did a number on my liver. I could not even tolerate the bare minimum dose of it so I had to switch to Jakafi. I have been taking jakafi 5 mg twice a day for almost two years and has been working great for me and liver enzymes are fine too. Thankfully, I did not have the itch issue. But it had done a good job with keeping my numbers in balance. I wish you luck and hope that Jakafi works out well for you. Good luck!
Thank you Br0wng1rl! This is encouraging to hear!
When I first got on Besremi and was doing the "up by 50 mcg each time" dose routine, I had to stop at around 300 mcg because my liver enzymes were elevated. PharmaEssentia evidently says it is ok for some elevation, but my doctor and I worried, and I got off it for a few months. When I started again, I took a dose of 100 mcg for many months, and the HCT and platelets behaved pretty well. Because of symptoms/side effects (?), I moved down to 50 mcg twice a month, then once a month, where I am now. The symptoms are a somewhat better, the HCT is moving a bit up and down but generally quite good, but the platelets are up 100,000 or so, rising slowly. We are doing the slow and steady approach, and I hope I don't have to change my dose any time soon.
Has you allele burden changed? Have you gotten any measurements of it? Have you been put on Jakafi?
I have not returned for that supreme treat of puncturing. (They did not even offer me pain relief for the BMB!) I figure I should give it a few years. My original allele burden was around 38%. No Jakafi prescribed.
It would make sense for to ask for an allele burden test to see what impact the existing treatment has had on your AB before you change it to another treatment. That might help to identify how effective the new treatment is vs the prior one. There is a blood test which can test for it- you don’t need the full BMB
The Besremi label does not call for modification unless LFTs = 5x ULN or there is elevation in LFTs with concomitant bilirubin elevation or other signs of hepatic dysfunction. I decided to intervene when LFTs = 3x ULN. My Integrative Medicine doctor recommended Milk Thistle Extract which is sed in Integrative Oncology as a liver protectant. It restored LFTs to an acceptable level.
If you and your care team are concerned about LFTs, a switch to Jakafi seems like a reasonable choice. If you are experiencing aquagenic pruritis, a switch to Jakafi seems like an excellent choice.
Wishing you success moving forward.
Hunter, which Milk thistle do you prefer?
Thank you
I use the brand recommended by my Integrative Medicine doctor, Silymarin by Pure Encapsulations. It is available from various sources, including Amazon.
250 mg dose of milk thistle?
500mg Silymarin - Pure Encapsulations brand.
Thanks Hunter-
I had high liver enzymes as in 3x and 4x normal range as soon as I started taking ET treatment with HU then same with anagrelide when hematology referred me to liver specialist. Stopped treatment for 30 days to test source of increase and saw enzymes come down and blood tests in total were still good for me. Started low and slow peginterferon for platelets which side effects were few and tolerable but enzymes started trending up again. thanks to this forum I learned about milk thistle extract which within 3 weeks had enzymes trending down. Hematology supported taking it and I have been taking it continuously for some time. It is managing enzymes quite well. Had to increase the dose as peg increased to where I am today at 90 mcg weekly. I am taking three 250 mg capsules twice per day. Our situations are different but thought it important to note the milk thistle supplement specifically for liver enzymes has worked very well. I hope you find the best drug solution for your situation. Stay safe!
I will order some milk thistle today! It sounds like my Dr. has decided to switch me to Jakofi but mik thistle would probably do me some good anyway.
I can confirm the itching burning is completely gone for me with Jakafi. Massive difference.
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Switch from Besremi to Jakafi
