Interferon and liver enzymes

Diagnosed with ET 13 years ago. Hydroxyurea stopped been effective 16 months ago. Been using interferon for over a year now, 45mg weekly, thankfully all going well normal blood counts BUT Liver ALT rising and rising, thyroid now abnormal too Due to shortage, been told to take 90mg now fortnightly, will this cause more probs ? Haematology dont look at liver, thyroid etc only the platelets, tell me these issues are up to GP. Anyone else with same things going on and confused. Anxious about the 90mg dose due soon. Just curious, we all get different advice, different treatment But hey ho, I am grateful for my results and wish all others the best

[Leveret20]

I have been on Pegasys since March this year. When my haematologist agreed to prescribe it, he said he would be keeping a close eye on my liver function in particular. It has been fine in my case, but that implies that Pegasys can have an adverse effect on the liver. I have seen suggestions from others on this forum about supplements that can protect the liver, so you may get more helpful replies from people with direct experience... I hope you can resolve this quickly.

[russkatt in reply to Leveret20]

I had to stop Pegasys because my liver enzymes were way to high. Back on HU and enzymes are back to normal in 1 month.

[Blood123]

Gosh. Polycythemia Vera 12 years & on Hydrxyurea for most of that time. Platelets last time 1124 but hemacrit 40 which is still below 42 for females. 1000 mg daily H. Oncologist tells me it’s a balancing act, no changes so far. What stopped working with the hydroxyurea?

[Hidden in reply to Blood123]

Platelets were only slightly rising, it was to do with other bloodworks, particularly hb levels. But yep we all different some been on hydroxy for over 15yrs and doing good

[RoundTheWorld]

On Pegasys ~4 months; my haematologist does monitor my liver values. He said a slight ALT rise above normal was perhaps due to the Interferon and we would be keeping an eye on it.

Since then I have had two dose increases; the bloods taken after the first one showed my ALT was (just) back to normal range; have yet to see whether the second one (now at 90mcg) affects my liver function.

[hunter5582]

It is the hematologist's job to monitor for possible adverse effects of any medication prescribed for a MPN. Monitoring for liver function is a basic standard of care for someone on interferon.

My LFTs reached 3X/ULN on a relatively low dose of Besremi. My Integrative Medicine doctor prescribed a Milk Thistle extract, which is used as a liver protectant in integrative oncology. It worked, restoring my LFTs to normal.

I would recommend having an agreed upon cutoff for how elevated LFTs can be and still be acceptable. Likewise with thyroid function, which can also be associated with interferon use. This is your hematologist's responsibility. If your docs will not do this, then suggest they should be replaced by a care team that will address their responsibility to manage patient care.

Wishing you all the best.

[Nerjalover in reply to hunter5582]

Hunter- sorry but what is an integrative Medicine Doctor- I know you are in the States but we don’t have them over here in UK I don’t think?

[hunter5582 in reply to Nerjalover]

Integrative and Functional Medicine are two disciplines that look ay health in a systemic holistic fashion. You do have both types of medicine practiced in the UK. Here is a bit about the two types of medicine. balancedwellbeinghealthcare...

Functional Medicine doctors can be found on this website. ifm.org/find-a-practitioner/

Integrative Medicine docs can be found with a Google search. google.com/search?q=integra...

[Hidden in reply to hunter5582]

Hunter can I ask you a question please. I been on 45mg interferon for just over a year ALT climbing 120 Thyroid up and down but never too high. All other bloods doing good, platelets at 330 To be honest I am blessed that never had platelets above 900. But due to shortage have to take 90 fortnightly now, would you be taking 90 if platelets really good ? Does it still work just like having 45 weekly ? Just curious for your knowledge as Im feeling anxious after taking bigger dose yesterday, think Im imagining symptoms lol

[DougyW]

90 mg is not a lot. As its fully working have they considered reducing the frequency to see if that continues to work?

[Anag]

hi Magical.

I think this is the kind of doctor I don’t like. The liver needs to be supported. It’s not to be ignored. Regular liver cleansing with herbs are a go to. Also, castor oil on the area over the liver, plastic wrap on that area, then thin towel and a hot water bottle works wonders! You can do that every night for a few days then 2-3x per week. If you‘d like it more simple, skip the castor oil and do the hot water bottle. 1/2 hr is enough or just fall asleep with it.

regarding the thyroid, I’ve been hypothyroid (Hashimoto) since I was 11. Since my diagnosis seven years ago, I changed cold turkey over to the Autoimmune Paleo diet and have stayed on it. This stabilized my immune system completely completely and whereas I had 3 to 4 colds per year and endless and antibiotics nasal infections pneumonia three times, all that stopped within a few months. I have only had three colds in that time that went away extremely quickly with herbal support and huge amounts of vitamin C. I was well in 36 hours. My eczema, depression, bloating, 25 kg, sleeplessness, brain fog, dental plaque, Constipation, etc. disappeared within six months and never came back.

Because of this, my doctor tried Besremi and it worked beautifully and for the first time my platelets plummeted. Unfortunately at the almost 2 year point, I started getting inflamed tendons and fascia in my extremities and my neck so much that I could not live anywhere close to a normal life. The anti-inflammatories were not working on this particular problem. After a several attempts to stop and start at lower dosages, the pain continued to returnAnd I was debilitated. I stopped the injections the beginning of June and I feel fantastic. The thrombocytes are slowly climbing up. They are now at about 650 so I increased the one anagrelide capsule that I was taking daily to two capsules. Unfortunately, anagrelide caused me heart valve problems, and I get heart pounding when I take it. HU causes me severe neurological symptoms so I can’t take that.

The important point for you is that the auto immune paleo diet fixed my immune system and my thyroid has been getting better even during the time of interferon treatment!! I have managed to reduce my thyroid medication where I take bio identical hormone by 60%! My thyroid has also grown 50%.

The important factors for thyroid support our vitamin D3 which I take at the amount of 60 to 70,000 IUs weekly in pill form, selenium, which I take by eating one to two Brazilian nuts per day and iodine in liquid form, which I drop on my skin once a day and smear it in. After smearing the iodine which stained my skin, the stain was gone very quickly 5 to 7 minutes. Once it stopped disappearing, that meant that I had enough iodine in my body.

These three factors are a healthy thyroid. The other key is to get rid of mercury in the body, the thyroid is mercury, beloved organ! I had 35 amalgams hence one of the reasons for having developed Hashimoto. I went through two difficult years, removing them. That further cleared up my body and my mind! I am healthier now at 59 than I wasn’t 42!

This is a bit of a book but details are so important!

She is good to find a really good alternative Doctor who really does good blood tests and adjusts the whole body through holistic health to accompany our illness and conventional treatments. Drugs work, but they have side effects. We need to counteract those while taking the therapy that is necessary. It is worth the investment!

Hope to have helped Anag

[Nerjalover]

Hi, I have had a great many years of strong meds. Firstly HU for 24 years at varying doses- until it stopped bringing my platelets down- for me this was a wonder drug though! Then a short spell of Anegralide which I was intolerant to and after 8 months it helped towards a heart attack. I have now been on Peg Interferon since March 2020. At the start fortnightly - now Weekly 90mg .

My oncologist ( an MPN specialist ) requested a fibro scan of my liver as he was concerned about my liver reading). I have recently had the results!!!! I have level 3 fatty liver disease. Apparently level 4 is irreversible. I am trying to lose weight ( I am 11 stone and 5ft 3inches) so not hugely overweight but they tell me that weight will help bring my levels down.

At the appointment with the liver nurse my husband and I were shown the graph of my liver results and it was like icicles spiking monthly - ever since I started taking Peg Int. We asked if this could be anything to do with the interferon and was told possibly. I am seeing my oncologist on Wednesday this week so may have more to report when I’ve seen him - it’s all quite worrying. I’m wondering if my Chronic Kidney Disease may have been impacted by the meds I’ve taken over the years (27 in total ) since my diagnosis ?

[Hidden in reply to Nerjalover]

I didnt have problems with my liver, thyroid until I started interferon. I have been told fatty liver too The joys eh, Wishing you good health Best Wishes for future days

[Hidden]

Thankyou All for your contact and help. How do you tell your haematology team that liver should be monitored. Its hard, as they have been good to me but I have been told they only look at the platelets side of blood results. Was told interferon bypasses the liver, but I did not have liver probs before interferon. At the same time the interferon has been brilliant for all other bloodworks, dont want to upset my care team and get taken off it I dont want to come off it. Might try the milk thistle and oil mmmm My ALT level 120 is this bad ?

[Carol0925 in reply to Hidden]

“All” requested blood tests are closely monitored. At the beginning with Pegasys my ALT was out of range a few times. It eventually decreased into normal range. Usually score below 45 are considered within normal range. You need to speak with your Team to discuss it.

[Hopetohelp in reply to Hidden]

I am in uk under nhs and my haematologist regularly tests my liver, kidneys, and thyroid. Should be monitored by the hospital whilst on our meds. They update my Gp after each consultation and request GP to monitor anything that might seem odd, like in my case cholesterol and glucose levels. I thought and still think this is usual practice for the consultant to carry out. I would have another word with them. Difficult I know. Good luck

[RoundTheWorld in reply to Hidden]

Who ordered the ALT test? If Haematology then I would expect them to be interested in the results as they must have had a reason to ask for them.

I do understand the dilemma of not wanting to irritate the team that is helping you but it's a reasonable question to be asking. If you are stuck then perhaps speak to your GP and be politely clear about your concerns; they should understand and may speak to Haematology on your behalf.

Where I am you can use an app to send in an admin request which often works well, as a GP will see it, but you don't take up a whole appt.

[Exeter21]

Haemotology DO look at liver & your Dr will not be interested in your care if you are under Haemotology. If you have problems you should ensure you have an MPN for overseeing your care. Consultations by phone or email can help you get correct treatment. I am on Peg & my liver readings closely monitored. I only take monthly low injections now & all bloods in range. I will not be increasing my dose because there is a shortage & take advice from my MPN . 👌

[KLCTJC]

Luckily, I haven’t had much issues with my liver enzymes on Besremi. Recently my alk phos was mildly elevated, but that has other causes than liver. Going to recheck this week or next. But I developed hypothyroidism from Besremi and I have read that hypothyroidism can cause elevated liver enzymes. I just increased my levothyroxine about 6 weeks ago, so about to check my labs to see if back in line. So, you definitely want to make sure you get your thyroid in line as it maybe affecting the other too. It is just possible. And make sure you check your labs on a good day, not the day after your shot. You need at few days if possible, that maybe it too. As liver enzymes can elevate temporarily then go back down. Hope this helps.

[Hidden]

Thanks All Such lovely, supportive and helpful people on this site Take Care All

[CLake4 in reply to Hidden]

My liver enzymes are increased with Besremi. I am on the MD Anderson trial and after I reached the high dosage of 500 mcg bi-weekly they started to increase. The doctor dropped my dosage to 350mcg bi-weekly at the last visit and they came down significantly with the dosage drop

[Solyesh]

My liver enzymes jumped when I started Peg - so despite the good blood work we had to take a medicine holiday for two months - they instantly returned to WNL. I also added Milk Thistle at the suggestion of my GP (and after asking my MPN specialist). When I went back on Peg, I went back at half the dose (went from 180 mcg/biweekly to 90mcg) - that has kept all my blood work WNL for two years now. Now just hoping can continue to obtain the Peg given the shortage (as already went on another 2 month medicine holiday due to the shortage and platelets started to creep back up).

[Hidden in reply to Solyesh]

I am going to ask if I can have a months holiday, but yep may be a long holiday soon with the shortage of interferon. How much milk thistle did you take, Hunter and others have suggested this too and oil pack, thats a good tip too. Its worrying for us all But maybe they will sort it quicker than we think Best Wishes Solyesh and all Stay Positive x

[ts75]

Hi. I got Graves disease from Peg (auto immune thyroid disease). So make sure to check that if your numbers are off.

[Hidden in reply to ts75]

Hi ts75 Yes My thyroid levels raised. I am feeling bit flat at moment, just been reading on here, how this poor fella nearly died with heart and lung problems due to raised dose of interferon. Ive just doubled to 90 yesterday due to the shortage, just watching for side effects now constantly. We can only all stay positive and go day to day, its crap at times Some people dont realise what its like living with mpns when it dont always show on the outside. Are u in the UK ts ?

[ts75]

I’m in Denmark. Have you had a TRAB measurement? That will tell you if you have Graves.

[Hidden in reply to ts75]

Never heard of that. At the moment GP just looking into the raised ALT blood tests and scan for liver due aahhhh He just said will repeat thyroid in 3 months

[ts75]

I would make sure your gp knows about the well-known side effect of Graves disease…

[Hidden in reply to ts75]

Thanks ts75 I will look into this Take care and have a brilliant day will talk again later date

[Windy51]

hi I was on Hydrea for over 2 years I had too many side affects I am now on Anagrelide it’s seems ok i started around 15 months ago I think my platelets have gone down to 263 we’re in the 900 less side affects for now ,hope things go well for you

[Hidden in reply to Windy51]

I was on hydrea for about 12 years, been on interferon for over a year now, have to say it felt like winning the lottery would lol when bloods showed normal platelet results, 1st time since diagnosed. But now having autoimmune probs by looks of it, but being over 60 contributes too. Health issues accumulating ggrrr Have to admit I do think highly of my Consultant, havent seen him in years in person, no bone marrow tests since diagnosed, but thats ok, Im a wimp lol But my Consultant straight, tells you how it is, and is there if I need it, I have seen recently that he is looking at my liver issues now too I know he cares. Its so weird though how we all act differently with medications for the same diseases and we receive different treatments and opinions from professionals. I do think we should all have access to an MPN Specialist from diagnosis. What you think Maz ? Im feeling anxious at mo, results pending liver aahhh This site does help, we all in same boat it is crap But hey ho we actually alive and on the site now, feeling blessed . So many others worse off, life is hard with its ups and downs. But grateful for this new day So feel for the hurricane sufferers in America. Love and Best Wishes to all. Happy Thursday