Peginterferon alfa-2a

[LisaLoveTacos]

Hola! I'm new to this group and newly diagnosed with essential thrombocythemia. The treatment prescribed is peginterferon alfa-2a. So far I have done one treatment and wow does it suck! I haven't seen anyone else talking about this course of treatment. Is anyone else doing this? I sure could use some support right now! 🙏

[hunter5582]

I have been taking the interferons (Pegasys then Besremi) since May 2021. I started on 45mcg of Pegasys, which is the standard starting dose for people with MPNs. I was about to bump up the dose, but switched to Besremi (100mcg). As my iron levels have improved, I have needed to bump up the Besremi dose and am currently taking 175mcg every other week. Note that you cannot directly compare Pegasys and Besremi doing levels as they are different interferon formulations.

The adverse effects from the interferons have been minimal at the dosing levels I use. In fact, I feel better on the interferons than before I began the treatment. Adverse effects are dose-dependant. I am wondering what dose of Pegasys you are currently taking.

All the best.

[LisaLoveTacos in reply to hunter5582]

I was started at 180 every 15 days. This seems like a really high dose the more I read. I feel so confused about my diagnosis and treatment.

[hunter5582 in reply to LisaLoveTacos]

180mcg is the dose to treat hepatitis. When used to treat MPNs, Pegasys is usually started at 45mcg/week. Sometimes 90mcg. Dosing is titrated up based on the person's response. Attached is a copy of one of the dosing protocols when using Pegasys for a MPN. nssg.oxford-haematology.org...

It is hardly surprising that you would have experienced adverse effects when starting on such a high dose. Suggest that a lower standard MPN dose would be much easier to tolerate. Note that Pegasys comes in a standard 180mcg increment in vials or prefilled syringes. This does mean that you have to waste most of the dose.

It is important to consult with a MPN Specialist rather than a regular hematologist to ensure optimal care. Unfortunately, this is not possible in all places. There are two MPn-expert doctors noted to be in mexico on this list. mpnforum.com/list-hem./

It sounds like you need some information about Essential Thrombocythemia. The MPN Voice website is an excellent place to start. mpnvoice.org.uk/

Here are a few more good resources.

powerfulpatients.org/help-b...

mympnteam.com/resources

These videos are also very good. Suggest starting with MPN Molecular Biology.

mpninfo.org/conferences/202...

One of the most important things as you enter into the realm of managing a chronic cancer like ET ia that educated and assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates.

Wishing you all the best as you enter this journey.

[Lyndjs]

Hi LisaLoveTacos , Hola and good morning.

I have just started Peginterferon Alpha 2a too. I have started on 45 and just had my 4th injection, this week. After my 3rd injection, I had a review and my platelets had increased, so the consultant wanted to double my dose. We talked about the side effects, I was experiencing and within minutes I was rushed off for ECG and blood pressure tests, my blood pressure was ridiculously high, but after the talk of a possible heart problem, it would be.

Fortunately I've had lots of support on the forum and I requested to stay on the lower dose. After reviewing tests my consultant agreed for me to stay on the lower dose until my next review in January. Low & slow is the advice I am trying to follow.

Initially, my peg journey was rough, with many side effects. Stomach cramps, diarrhoea, light- headed, joint pain, blurred vision, loss of appetite, fatigue etc. After my 4th injection things have significantly improved. I have my injection on a Monday so Sundays are my best day 😊

I really hope everything improves for you too. I was offered a choice between Peg & Hydroxycarbamide. The lovely people,on this forum, overwhelming recommend Peg.

I hope you have started on a low dose too. If not, it may be worth speaking to your medical team. Obviously we are all very different and I hope you can get support to manage this.

I was advised to take paracetamol 45 mins before my injection, I'm not sure if this would help too.

Keep us all posted. There are amazing people on here, who will be able to offer you support and improve our understanding of PV. I find thus forum very supportive and I'm very grateful, for this.

Try to do something you love, however small 🥰

Take care x

[LisaLoveTacos in reply to Lyndjs]

Thank you so much for your reply! I will take you advice and try the paracetamol before the next injection. Thank you!

[AndyT]

I’ve had ET for over 20 years and have been on Peginterferon alfa-2a (Pegasys) since 2015. It’s worked really well for me, with very good control of my blood counts and minimal side effects - just a bit of dry skin and itching.

I started on 95mcg weekly until my counts were under control. For the last few years I’ve just been on a maintenance dose of 45mcg every four weeks, which is very easy and still works.

What dose have you started on and what problems have you had to cause you to be unhappy with it?

[MAP44 in reply to AndyT]

Hi Andy,

I also have PV, Jak2+ and have been on pegasys for almost 2 years. I was itchy before the peg and after. My blood is perfect and has been for a few months now but I did start taking Beta Alanine each day and it totally eliminated the crazy itch!!🎉🎉. So I tell everyone I can because it works. Beta Alanine is an amino acid that body builders and fitness people use. I purchased mine from a supplement store for body builders. It is a tasteless powder I mix in a water bottle in the morning and at supper to drink. It can be added to your juice in the morning etc. When you take it makes you tingle a bit in the arms and legs, I love that because it only last 5 minutes and I know it is working. It comes with a scoop. I use around 1 scoop in the morning and 1 at night ( small scoop included). No side effects just a tiny tingle compared to the crazy annoying itch. I am a former Olympic Itcher.

Available online also🍻🙂

Thanks for replying I love to see the good spot you are in with this disease and my future, hopefully. 🥰

Container of Beta Alanine I purchased

[LisaLoveTacos in reply to AndyT]

I was started at 180 every 15 days. I had pretty severe flu like symptoms the first 3 days after the first injection. Headache, nausea, fatigue, and body aches. I'm hoping it gets easier with time, I guess.

[AndyT in reply to LisaLoveTacos]

That sounds like a very high starting dose. Many of us started low and built up gradually so maybe ask your doctor if that could be an option - say 45/90/135/180mcg over time. Lower dose weekly can work too, rather than a big one every 15 days…

You might even find you don’t need to go up to 180 - I never went over 90mcg, as that started showing good results.

[MAP44 in reply to LisaLoveTacos]

Lisa,

When I started Pegasys I was told to take it at night about an hour before bed. At the same time take a 600mg Tylenol arthritis tablet because it last longer then the other ones. In the morning was to take another of the same Tylenol and lay in bed a bit. If I needed another later to do so.

The worst time is hours after the needle so sleeping through much of the reaction is best.

I started at 90 and moved up in a few months to 135 and then was at 180 for 4 weeks. The big dose really kicked the blood into a downward trend. I then went back to 90/ week.

I can take the shot at any time of the day with no Tylenol needed, no side effects at all. Only took the Tylenol for the first 2 months and it really helped.

Good luck to you. 🌸🌼🌺

[MAP44]

Hi Lisa,

Welcome and best of health to you. You have found an amazing community here.

I have been on Peg or Pegasys for almost 2 years. Started out rough and slow but once it started the improvement was amazing.

Good luck to you 🍻🍀

[LisaLoveTacos in reply to MAP44]

Thank you, that's encouraging!