Peg interferon

[keviekev]

Hello Everyone,Been quite a while since being on here. Hope you're all doing well. Just some advice please.

Am on peg interferon 90mcg once a week & 75mg aspirin one a day .Had a blood test today.

Consultant called said my Haemoglobin is creeping up now 1.5,Haematocrit is 0.50 needs to be 0.45. I don't take any iron supplements but have been drinking Actimel,now know it's crap and won't do that anymore. So I guess that is a factor.

Now she wants me take 135mcg of peg interferon from the next 3 wks to see if things improve.

Has anyone taken that much. What are side effects & idea of recovery time. Am a bit worried to be honest.

Thanks

Kev

[hunter5582]

There are some on the forum who do take 135 mcg of Pegasys. Some tolerate the dose. Others do not. Side effects are dose dependant. If you are not experiencing significant side effects at 90 mcg you may be able to increase the dose without a problem.

It would be an option to have a venesection rather than increasing your PEG dose. That would be something to discuss with your MPN care team if that is your preference.

FY - I would double check this, but I do not think Actimel has iron supplementation in it. It may not be the best beverage in the world, but it would only be a PV problem if it had iron.

It is natural for erythrocytosis to increase when our iron levels increase. We do get dietary iron on an ongoing basis. The KISS explanation is that when we take in more iron, the JAK2 mutation causes our body to use the iron to make more RBCs rather than put it in storage, even though we already have enough RBCs in our system.

Suggest you go back to your care team if you have concerns about the higher dose. There are options to consider if you wish.

[keviekev in reply to hunter5582]

Thanks you very much. Will consider talking to my care team.

[Blonde25 in reply to hunter5582]

Hi Hunter

I've been feeling really fatigued this week and I bought oat milk to try , I have been using this all week ?

I've checked and it's high in iron 😩

I don't think I will be having anymore . I think soya is also high in iron .

I am now realizing that what food we have is very important to how we feel .

Can anyone recommend a preferred diet for PV ?

[hunter5582 in reply to Blonde25]

The diet most commonly recommended for MPNs is the Mediterranean Diet. It has variety of benefits, cardiovascular and anti-inflammatory.

If you are interested, there are several excellent presentations from the MPN Education Foundation 2023 conference. Dr. Angela Fleischman - Nutrition and MPNs, and Dr. Krisstina Gowin - Complementary Approaches for MPNs may be of particular interest. mpninfo.org/conferences/202...

Like most things in dealing with MPNs, diet is a balancing act. We need to ensure good nutrition and avoid the contaminants-toxins-carcinogens that are in the food stream. Iron is not easily absorbed from diet, particularly plant-based iron. Heme iron (animal based) is more readily absorbed. Even when managing PV, we still need iron in our bodies. It is used for more than making RBCs. If iron drops too low, we can experience significant adverse effects even when not anemic.

Suggest speaking to your care team about referral to a nutritionist if you want more case specific recommendations. Some hospital oncology centers have nutritionists who specialize in nutrition for cancer patients.

Wising you all the best.

[Blonde25 in reply to hunter5582]

Thank you hunter for your reply and the link it is much appreciated

[Exeter21 in reply to Blonde25]

I went onto Almond milk after Soya & Oatmilk . Not sure any make a difference unless drinking gallons of it I only have it on cereal & no iron probs on any of these on my blood readings . To be honest normal semi skimmed is not bad for us. Food intake more important Med diet as Hunter confirmed & health professionals. Stay off loads carbs . Fish & chicken ok . Fortune to have son living Spain so their cafes have amazing choices healthy foods. However when wet gloomy & cold in UK they attack the cake & pastries . I managed to keep off them & feel good 👌

[Deya08]

Hi I would also be interested to know this as I may potentially need to go on interferon.

I am presently on Hydrea and also take cartia (aspirin) daily. My haemoglobin and hematocrit levels are high and I'm receiving weekly vene sections for the last couple of weeks. If my haemoglobin doesn't come down I've been told I would need to go on interferon in addition to taking hydrea and aspirin. I was told it can make you moody but everyone tolerates this drug differently.

[Exeter21 in reply to Deya08]

interferon never makes me moody however Hydroxy made me feel horrendous & now off it 👍

[Deya08 in reply to Exeter21]

That's what I found too. Thanks for the reply.

[monarch5000]

Increasing your dose to 135 mcg is unlikely to lower your HGB and HCT in a mere 3 weeks. It might after 3 - 24 months, but 3 weeks? Nope.

An alternative strategy to more quickly lower your HGB and HCT is to stay at 90 mcg and undergo a venesection roughly every 3-4 months.

[gvibes]

hey Kev. The temporary increase of peg to 135 worked for me. It wasn’t working that well a year into treatment and then my doc increased dose to 135 for a few weeks and that seemed to get it all going. The side effects increased some but tolerated them for a few weeks. I believe it is a treatment strategy to increase for a while - I saw some paper about it. 6 months later I was in hematologic remission and at a dose of 45. So stay positive and I hope it will work for you All the best Steve

[Manouche]

Hi keviekev,

I’ve been on Pegasys for over 2 years with no noticeable side-effects. Some patients are taking 180mcg for several years with no real problem either.

[ainslie]

you don’t say how long you have been on Peg at that dose so it may just need time or it may need a higher dose even temporarily. However what you do need is to get venisected in the meantime, as somebody else mentioned the 135mcg dose can take weeks or months or even years to work 100% if at all but your thrombotic risk increases exponentially above 45 for males. Don’t mean to worry you but unless your Haem can explain very clearly otherwise you need to venisect now to get Hct below 45, better safe than sorry, it’s in all the guidelines.

[keviekev in reply to ainslie]

Thanks ainslie,I started with 45mcg in early July 22 for a short time my platelets were still high & then told to take 90mcg,have done so since early Aug 22.

[MAP44]

Hi Kev. I started with a dose of 90 and jumped to 135 and later 180 for only 4 weeks each. I have PV it did indeed help to jump start the drop in my platelet count ( at just under 1000 ) and eliminated the need for any more phlebotomy.

I did experience more insomnia especially 3 or 4 days after the shot but it mostly disappeared once returning to a dose of 90/ week. I was totally ok with raising the peg dose to get the medicine working and it did. I have the PV itch sometimes and had a milder form of it long before being diagnosed. I also take aspirin daily.

I have been on pegasys for only 12 months but the brain fog lifted once the medicine really kicked in. Phlebotomy worked well but was stressful on my mind and body. Pegasys has been a wonderful medicine for me. Best of luck to you 🍻