HU vs Pegalated Interferon?

[Artelou]

Hi Everyone. I'm 35 and have recently been diagnosed JAK2 positive ET. I'm currently on 1500 HU and aspirin daily. It's making me feel pretty rubbish. I would like to talk to my Haematologist about changing to Pegalated Interferon. Can anyone tell me their experiences with pros and cons of both. Thanks.

[MacDWild]

Hi Artelou, I also just started Hydrea for Jak2+ ET. I'm 42. I have been on it 5 weeks and felt like utter crud when I first went on it. Now I feel fairly normal. They are increasing my dosage soon, so I am not sure I will stay feeling well. How long have you been on it? Have you given yourself time to adjust? I have not tried Interferen but I was on injection blood thinners for a bit and bruised a lot from the injections. I was happy to have everything in pill form. Hopefully someone on here will have tried both drugs and can give you more insight. Best Wishes!

[Artelou in reply to MacDWild]

Thanks MacDWild. I've been on HU since Christmas and have had 3 dose increases within that time. Maybe I haven't had a chance to get used to the current dose.

[MacDWild in reply to Artelou]

Did you adjust (eventually) to the first 2? I am on 500 and increasing soon to 1000. Not looking forward to the increase and actually post poned it by 2 weeks because my husband is going out of town and we have a small baby. I have no time to feel like poop.

[Artelou in reply to MacDWild]

I found 2 tablets per day fairly ok after a few days. 3 per day has really knocked me around. We have 3 and 5 year old boys. No time to feel tired and nauseous!

[MacDWild in reply to Artelou]

Oh no! How long are you supposed to stay on the 1500? Is there a certain platelet count goal? Mine is below 500. I'm still in the early steps to get there though.

[Artelou in reply to MacDWild]

The goal was under 450 and it's getting closer. I'll find out on Thursday if 3 is the magic number. 🤞

[Helena303 in reply to MacDWild]

I was on 500 mg then it was increased too 1000. Im ok still get a bit tired by I feel better than before i started them. My headaches were my main concern. They are now much improved.

[michael123 in reply to Artelou]

Why dont u try reducing your dose of hu. That's what I did. Platlets stay higher but I feel so much better. Take just aspirin and supplements like serrapeptese and nattokenise which helps the scar tissue and blood clots. Also I find you become tolerant on high doses of hu , thus having to up your dose. I went from what u take now. To every other day, then 3 times a week , then just 2 days. Then none.

[Artelou in reply to michael123]

Hi Michael. They are keen to keep my platelets within normal range as I have had bilateral pulmonary emboli in the past. The thought of more clots terrifies me!

[francesb]

Hi, I've always understood that for young people the best option is Pegelated interferon so I'd definitely talk to your consultant about switching. It's a slow acting drug and starts with a low dose. Hopefully you have an mpn specialist, if not might be worth seeking one out and / or getting a second opinion. Good luck.

[RedYellow]

Hi Artelou. I'm 38 and take pegelated interferon. I've been on it six months and was on it over a year previously. I know it's different for everyone but I've never had any side effects and I find the injections quick and easy. I started on the lowest dose once a week and reacted well so now only inject once a fortnight - my main issue is remembering to do the injection! I'd definitely recommend giving it a try if you can.

[Tiff84]

Hi there. I was diagnosed with Jak2 ET positive at 28. I’m now 34. However, I was not given any treatment until recently. I was told I was too young for treatment, and that I should really get used to the symptoms and learn to adjust because I’m going to have this for the rest of my life. (No joke). Anyway, I will say, the disease itself causes you to feel very unwell. I would get headaches all the time (bad ones), dizziness, skin would turn purple, hands always cold, numbness and tingling sensation in my toes that would turn into pain and then numbing in my feet, body would ache randomly, bruising super easily, lowered immune system and more susceptible to colds, the flu, and extremely bad coughs. I would also get horrible night sweats, regardless of the temperature in the room, and extreme fatigue. So, this disease can make you feel horrible on its own. I also lost my appetite and it became harder and harder to eat. My new oncologist who has decided to treat me due to being very symptomatic and rather sickly, didn’t want to put me on HU due to my age. Therefore, I can’t really say much on that one. However, I had my first injection of Pegasys today. I took Ibuprofen before my spouse injected it. I felt better than I had in years! This may be because a lot of the symptoms I already had due to the ET, but surprisingly, not as bad. I didn’t start feeling crappy until I was out and about, and the ibuprofen began to wear off. The muscle aches got a little worse than usual, I began to feel dizzy, and then a little off, kind of like I was floating. Then I began throwing up in my mouth....not pleasant. However, I got home and took some ibuprofen, and I began feeling a lot better. Therefore, unlike the symptoms from the ET, all you have to do is take ibuprofen and you are golden. Now, this was only my first day, so I don’t know the long term effects. But, I’d assume the first day would be the worst, due to the symptoms supposedly getting better after your body getting used to it (booklet said 2 weeks). Anyway, I’ll keep you updated, and I hope this helps. My oncologist said that HU would probably make me really sick, and Pegasys has a much better history of putting ET Jak2 patients into remission. However, it generally is a little harder to get, but I’d recommend trying, it’s definitely worth it. Good luck to you, and hang in there! There aren’t a lot of younger individuals like us in this forum. Like I said, I’ve had this for awhile. If you ever want to chat or have any questions, feel free to message me. I don’t mind:). It really helped me to have others to talk to that were going through similar things as me, it may help you as well.

[Artelou in reply to Tiff84]

Thanks so much Tiff84! I would love for you to keep me updated on how you're doing on the Pegalated Interferon. I wish you all the best!

[Pieter123 in reply to Tiff84]

Hi Tiff84

My daughter is now 17. She is a month on interferon but get a lot of flu like symptoms. Her platelets is now 1368. She gets a lot of headaches I couldn't send her to school today. Doesn't looks like the interferon is working but I don't want to put her back on Hydrea. She was 2 years on it. She may not use ibuprofen only paracetamol and that doesn't work.

[Malaika]

Hi. I too took 1500 of Hu for quite a few years. I walked round in a fog and felt just awful. As the Hu stopped controlling my errant platelets I am now on interferon. Still can have issues like nausea but feel much better than when on the Hu. But remember we are all different. Hope it goes well for you.

Kindest regards

Malaika

[Jocko]

Hi Artelou,

I have been on weekly low dose Peg and daily aspirin since September 2017. The side effects have been pretty mild and I live life pretty much as I did before I was on Peg. If you have a choice and you are not happy with HU then give Peg a go. What have you got to lose. You can always go back to HU if it doesn't work out. Good luck.

Jocko

[Hidden]

Peg Interferon is the treatment that is recommended for those diagnosed at a young age. It would be worthwhile discussing changing to it with your oncologist.

[Wyebird]

Hi and welcome, were you put straight on 1500mg a day or your dose slowly increased to that. How high are your platelets? Once they drop sufficiently you meds will drop hopefully you will feel better. I’m on 17 x500mg a week of hu. With that not then controlling my platelets I was put on anagrelide as well. It’s not for everybody and my body can’t cope with 14 of those a week so currently on 10 anagrelide and 17 hu.

Being recently diagnosed can take its toil on you physically and mentally. Maybe Tell your consultant how you feel. I’m very lucky I have lots of support at my clinic. If you don’t try contacting Macmillan nurses. I used them once for councilling they were brilliant.

[JackLina]

Pegasys every time for toleration and effect and as mentioned, that is the drug of choice for younger JAK2+ ETs such as yourself. ATB.

[Mackydee123]

Hi Artelou

I can’t advise on HU as I was started straight on Peg but I can tell you that my first couple of jabs hit me with a few side effects such as restless nights, itchiness and flu like symptoms but after a few goes it faded completely and I don’t have any now.

I’m 39 and on a weekly dose of 45mcg Peg Interferon. Been 9 months now and I’ve steadily dropped from 1100 to 250! My Con says if I drop again I’ll be moved into a fortnightly maintenance dose, which I’m delighted about!

If your meds are not working for you, ask for a review, I think the consensus is the younger you are the more suitable Peg is.

Good luck

Kerry

[Sam2022 in reply to Mackydee123]

Hi Kerry, how much does the peg interferon cost? Glad interferon work pretty well on you. I am taking HU now, but concerned the side effects in long term.

[ihavegotet]

I have been on pegasys for one year now and my platelets and everything else are pristine. I went from platelets of 1.4 million to 280 in 6 months. The key is slow and steady and patience. Very minimal side effects. Your numbers will jump around at first but be patient. Good luck. 45 mcg is a great place to start.

[charl17]

My unprofessional opinion is that Pegasys is better than HU, especially for the young and especially for those who want to procreate. I was on HU for 4.5 years and I got a spontaneous ankle wound that would not heal until I discontinued. After 10 weeks of nothing, I started Pegasys. My platelets dropped to normal after 2 injections. WBC and hematocrit are slower to respond. I am on 90 mcg/week. On HU I felt like I needed to take a daily nap. It made me drowsy. After injecting Pegasys, I feel alternately sweaty and chilly. Acetaminophen and ibuprofen help. Sometimes I feel wiped out but not sleepy. If I worked (I am 69) I would inject on Friday evenings.

[Not2bad]

Hi I think I read a post on here recently about how people with mpn shouldn't take ipubrofen. Something about an effect it has on the blood.

[Helena303 in reply to Not2bad]

I’ve had to stop taking Naproxen as it effects et.

[Tico in reply to Helena303]

Echoing you and Not2bad people with mpn's should not take ibuprofen because of the risk of bleeding. A lot of us with mpn's are on either aspirin or clopidogrel with other meds,so the advice is to avoid ibuprofen and take alternative pain relieve. Atb, tina.🤗

[Mazcd Partner MPNVoice in reply to Not2bad]

you should not take Ibuprofen if you are taking aspirin