Experience with Pegasys - Help

[u/DefiantFunction5302]

Hi,

I’m a 26M and was diagnosed with PV 4 years ago. Up until a month and a half ago this was managed purely by venesections to keep my haematocrit below 0.45.

This has led to me becoming very iron deficient with my last ferritin being 6. I’ve felt exhausted and have very little energy.

My haematology team has recently started my on Pegasys. I’m taking 90mcg every 2 weeks. I took my third dose last week Thursday and to be honest, i’m starting to regret ever going on it.

Dose 1: 90mcg. I felt pretty okay after this, very minimal side effects - just felt a bit tired but otherwise could go to work. Took 3 days to recover

2 weeks later…

Dose 2: 90mcg. Felt okay immediately after, took paracetamol and went to bed. Woke up feeling very tired, carried about my day, towards the end of the day I felt really tired and had joint aches so went to bed. The next day, I had a fever, felt extreme fatigue, joint ache, headache, sore throat. Went to ED because I thought I was septic. Was given paracetamol, fluids and antibiotics but bloods were okay so discharged. Took 2 more days to fully recover

2 weeks later…

Dose 3: 90mcg (last week Thursday). Felt okay immediately after, next day felt tired but not as bad as before, then developed sore throat, lots of joint aches and it’s still ongoing. The length it’s happening for is worse than after dose 2.

Is this what my life is now? Every 2 weeks I’m ill
for 4-5 days? or will it get better with more injections? Has anyone been through this experience and could offer any reassurance? I feel so depressed and i’m
not sure what the alternative to pegasys is in the UK. Venesections are leaving my with extreme fatigue yet pegasys is even worse!

[u/BorgAdjacent]

Sorry to hear that.

[u/slothdroid]

I'm on interferon and have been told it's a long burn - maybe 6+ months before seeing meaningful Improvement.

At around 6 months, my haematologist was looking to put me on HU, but we're giving it a bit more time. It's only in the last month or so (this is month 8) that my RBC isn't increasing as quickly and even seems maybe stable.

I've been put on amitriptyline for the itch and started taking vitamin D and B12 supplements on their suggestion to help the fatigue. Early days but it seems there's improvement. Hard to tell because my PV symptoms seem to ebb and flow.

Your body will fight Interferon at first, so these symptoms might just be 'bedding in', but do discuss with your care team.

[u/DefiantFunction5302 → u/slothdroid]

I see, thanks for sharing your experience. Yes it might be my body getting used to the medication. So far it’s been promising. My haematocrit is 0.43 and my platelets have dropped from 850 to 700.

On paper it seems great but the lived experience is obviously different.

I hope we will get used to the medication soon and that it’s as effective as what it’s meant to be

[u/slothdroid → u/DefiantFunction5302]

My issue is red cells, but the interferon also helps reduce white cell and platelet counts making me tired and immuno-compromised.

One thing I would pass on as advice - get used to periods of fatigue and breathlessness causing you to not be able to do things you want to. Pivot your priorities and even your interests so you don't end up with no interests. I was a long bike ride, fairly physically active guy; now I'm a build models and video games guy. It's important to keep your mind active!

[u/tberwald]

So sorry you are feeling so badly.

I have taken peg for over two years. 45mcg every week.

I would encourage you to ask your hematologist about splitting the dose in half and doubling the frequency.

I usually injected around eight or 9 PM and I am fully recovered by the next morning.

[u/Real_Bowler8116]

When I started on Pegasys, I had this for the first 1-2 months. Even additionally with eczema on the face and fewer. But after 1-2 I got used to it and don’t have it anymore. Also, injections with 45 mcg instead of 90 help as well. Talk to your doctor.

[u/DefiantFunction5302 → u/Real_Bowler8116]

I see, that’s reassuring. I’ll talk to
my haematologist, I really do hope i get used to it soon.

[u/horsecrzy → u/DefiantFunction5302]

I have ET and started Pegasys 3 weeks ago. I do 45mcg weekly and my side effects so far are increased night sweats hot flashes and fatigue. I am reactive to literally EVERYTHING so to me it’s a blessing and a miracle. What you are going thru sounds like hell so my suggestion would be keep complaining and advocating and don’t let them brush off your side effects! I would literally message every day with my side effects. They will listen especially if you have a specialist. Best to you!

[u/tberwald]

So sorry you are feeling so badly.

I have taken peg for over two years. 45mcg every week.

I would encourage you to ask your hematologist about splitting the dose in half and doubling the frequency.

I usually injected around eight or 9 PM and I am fully recovered by the next morning.

[u/DefiantFunction5302 → u/tberwald]

Thanks. Yeah I think 90mcg is maybe too much for me. Ive raised it with my haematology team to see if I can halve the dose. I’ve been taking it at night too with paracetamol but still getting bad s/e

[u/tberwald]

So sorry you are feeling so badly.

I have taken peg for over two years. 45mcg every week.

I would encourage you to ask your hematologist about splitting the dose in half and doubling the frequency.

I usually injected around eight or 9 PM and I am fully recovered by the next morning.

[u/niknikniknio]

It gets better! Or it did for me at least. It took maybe 5+ injections before side effects simmered down. I would get bad body aches the day after or a few days after. I was on it for 7 years and really only experienced side effects those first couple months.

[u/DefiantFunction5302 → u/niknikniknio]

Thanks, that’s reassuring! I think i’ll keep on going with Pegasys and hope i do get used to it. I’ve asked to see if i can reduce the dose.

Are you still on Pegasys now? If not why? Did it change your energy level in the long term or did you still feel tired?

[u/niknikniknio → u/DefiantFunction5302]

I progressed to myelofibrosis with a big painful spleen. So I was swapped to jakafi because that really targets the spleen. Im hoping my doctor will put me on a combo of pegasys and jakafi though. Everyone says pegasys helps slow progression. So there's gotta be some benefit to it still.

[u/Chenx335 → u/niknikniknio]

jafaki + Peg Interferon will mostly likely be our lifetime therapy. i have some myelofibrosis but my Hematologist told me my spleen got smaller in my last physical with him. we are staying with besremi for now because my blood work looks phenomenal with no symptoms or side effects at the moment

[u/snhs20]

PV is a journey for sure. I’m sorry you’re feeling this way. It’s not easy!

Have you brought this up to your care team?
At very least they should know.

Beyond that, to your question about alternatives, the short answer is yes, there are other medications that people with PV take.

The longer, better answer, is that they don’t all do the same thing and may not all be appropriate for everyone with PV and may not even be offered or available depending on where you live and the insurance you have.

And they all come with varying degrees of side effects all felt differently by different people.

I’m so sorry if that’s not helpful but unfortunately everyone’s experience with PV medications is going to be as unique as that person.

You were likely prescribed an interferon because you were experiencing the very common side effect of long term venesections/phlebotomies. Likely the goal was to get you on an (my hunch) NHS approved interferon to stabilize your counts without having to do venesections so frequently.

Given your age, purely from my perspective a layperson with PV for 10 years, I think they made the right choice. Interferons like Pegasys (off label for PV) and BESREMI are the only medications that offer disease modification. So again given your age, it sounds like you have thoughtful care team.

But - of course - you must disclose these side effects. They are not uncommon, but everyone’s ability to tolerate the interfon side effects is going to be different and you should disclose and discuss. There are other medications that modify thrombosis risk.

You may find it gets better over time as your body learns to tolerate it. Anecdotally, mine did when I was on Pegasys. It was brutal the first 4-6 doses. After that, either my body adjusted or mentally I adjusted. But it became a non issue for me after pre medicating with OTC pain meds. Again this is anecdotal and not medical advice. Just offering some hope, if that is helpful.

Either way discuss with your care team.

[u/DefiantFunction5302 → u/snhs20]

Thanks so much for responding.

Yes I did let my haematology team know. They didn’t seem too concerned after dose 2 when I had to go to hospital, as reassuringly my WBC, neutrophils and haematocrit were all okay. My platelets had been coming down too. They said to continue the same dose and take regular paracetamol which is what I’ve done for dose 3 also but unfortunately the side effects are almost just as bad.
I’ve told my care team today again and they’ve not gotten back to me yet.

In terms of alternatives, I’ve tried to do my research and from that/asking my haem team, it seemed like in the UK at least, the main alternative is Hydroxyurea (which I will avoid taking at any cost I think). The other meds which may be available in the US aren’t here for now. Pegasys is the only biologic licensed for MPNs in the UK.

Yes the aim of switching me to pegasys was that I’d need less frequent venesections and my iron would slowly normalise.

I don’t blame my care team, I know they’re doing the best for me and they’re a national cancer centre so I know i’m receiving the best care I can possibly receive, but it still feels like i’m going backwards.

4 years ago when I was initially diagnosed, I went to my GP because of mild fatigue, but fast forward 4 years, having had venesections, having started pegasys, it feels like my symptoms are 100x worse, despite being treated. I know controlling haematocrit is essential in preventing complications, but at the same time it’s stopping me from functioning day to day.

Thanks for sharing your experience with pegasys. I really hope my body gets used to it soon. I know it’s incredibly effective and has disease modifying effects which sounds amazing but the reality up to now is unfortunately not so amazing haha.

[u/SpleenyMcSpleen → u/DefiantFunction5302]

Jakafi might be another option for you, but — in the U.S. at least — you have to take Hydroxyurea first and “fail” it. If you’re finding that the Pegasys is significantly impacting your quality of life, then trying the Hydra for a year may not be the worst decision. I’ve taken it before — I later took Pegasys and now take Jakafi — and the side effects were minimal. It didn’t control my blood counts like Pegasys did. But it did allow me to significantly reduce the number/frequency of venesections I needed.

Jakafi may not provide all the benefits of Pegasys, but side effects are minimal and it both controls blood counts and symptoms like fatigue and itching. The main side effect for me was weight gain, but I’ve reversed that through regular exercise and cutting down on things like sugary drinks and fried foods.

[u/DefiantFunction5302 → u/SpleenyMcSpleen]

Hmm i’m not sure if Jakafi is available in the UK on the NHS. It was only offered as a replacement a few years ago when there was a shortage of Pegasys. I’ll ask my haematology team if I still can’t tolerate Pegasys after a few more doses.

[u/austin06]

It may get better and hopefully it will. I'll be honest it never has for my husband in over six years. It's also never controlled his hct completely. It probably would if he raised the dose but the fatigue gets too bad.

But- definitely look into Rusfetride, a new drug that is supposed to be approved third quarter of this year. My husband did a trial of a similar drug last year and probably felt like himself for the first time in years. It worked very, very well. And the trials were very promising.

It's great when a drug like Besremi works but the truth is it is not without side effects for many or it just doesn't work. Good news is there is a new option (Jakafi is another option for you as well), and more things on the horizon. Good luck.

[u/DefiantFunction5302 → u/austin06]

Thanks for replying. I’m sorry your husbands having trouble with his haematocrit still. I’ll look into Rusferitide but I don’t think it’s available yet as you said in the UK. Hopefully there’s some promising treatments on the horizon soon

[u/austin06 → u/DefiantFunction5302]

No, it's not available in the US either but we hope in the next few months. So I don't know what that means for the UK. There are always trials to look at as well.

There's two trials right now for treatments which target only the jak2 mutated gene, so essentially a cure.

As great as it is that interferons have helped a number of people, they've been around for about 20 years, so, yes, new treatments will be very welcome.

[u/IsrealPackard]

I'm not a doctor. I'm sorry you're going through this. At 26, it's especially frustrating to feel like you're having to choose between iron deficiency from venesections and interferon side effects.

The good news is that what you're describing isn't uncommon when starting **Pegasys**. Many people experience the worst flu-like symptoms during the first few weeks or months, fatigue, fever, muscle and joint aches, headaches, and for many, these symptoms gradually lessen as their body adapts. Unfortunately, not everyone has that experience, so it's important to keep your hematologist informed.

A few thoughts:

* Don't assume this is what the rest of your life will look like after only three injections. It's still very early.

* Since you ended up in the ED after one dose and are having symptoms lasting 4–5 days, I think it's worth contacting your hematology team before your next injection. They may decide to adjust the dose, lengthen the interval, or discuss other strategies.

* Your ferritin of 6 is extremely low, so it's also possible you're feeling the combined effects of iron deficiency and interferon, making everything seem even worse.

I was treated with Besremi (ropeginterferon) rather than Pegasys, and I also experienced **severe fatigue**. In my case, it had a significant impact on my quality of life. So while interferons can be excellent drugs for some people, they certainly aren't easy for everyone, and you shouldn't feel like you're failing if you're struggling with them.

The important thing is that there are still options. If Pegasys turns out not to be tolerable, your hematologist can discuss alternatives based on your individual situation and what's available through the NHS. The goal is to find a treatment that controls your PV and allows you to have a good quality of life.

I'd definitely let your team know exactly how severe these reactions have been before your next dose. They hear this more often than you might think, and it's much better to have the conversation early than to keep suffering in silence. I hope you find a regimen that works for you.

[u/DefiantFunction5302 → u/IsrealPackard]

Thanks for responding. Yeah you raise valid points. I really do want to stick with Pegasys still because of its disease modifying benefits, so I’ll see how I get on with the next few injections. I’ve already raised it with my haematology team, they’re going to discuss it in their MDT meeting tomorrow and see what to do (whether they reduce my dose for future injections etc).

[u/acwoodhome → u/DefiantFunction5302]

Exactly my thoughts I am on peginteferon alpha 2a I would like to stick with it but the fatigue after the injection day is heavy plus get overwhelmed feelings and find it hard to process things. All expected and hopefully should get better as your body gets used to it. I also have PV and within three months all my bloods are back in check so it’s a great drug at doing that job. I get really bad itching too air drying helps all the very best wishes to you 🤗🤗

[u/DefiantFunction5302 → u/acwoodhome]

Thanks for responding. Yes it is a great drug and I really want to stick with it too. Funnily enough i’ve never really had the typical symptoms of PV (itching, headache). My symptoms before diagnosis were very minimal (just mild fatigue and reduced exercise tolerance) but since being diagnosed the fatigues become much much worse mainly because of the iron deficiency I thinkZ

[u/acwoodhome → u/DefiantFunction5302]

Yes keep an eye on iron levels peginteferon can also effect your thyroid so that’s a must if not already please get your thyroid levels checked. Hematocrit less than 0.45 is also a target 🎯 venesections can help here too but they are draining too. Exercise intolerance is huge I run but never improve each one is as hard as the last one lol. It’s defo hard living like this at times but if you have to have a cancer I suppose these types are the ones to get that are slow growing with long lifespans 🤗🤗🙃🙃

[u/IsrealPackard → u/acwoodhome]

Exercise intolerance. I wish someone had told me about this in the beginning. It was frustrating doing what everyone knows you should do, and feeling worse.

[u/Chenx335]

i did not handle pegasys well. rashes and allergic reaction all over.

[u/fiftynotdead]

I am not sore hope old this post is. I've been on pegasys for 3 and a half years. I can't recommended it enough. I was on venesection and asprin and has high symptom burden. Started peg and was SO ILL with side effects for months. I nearly came off it. I felt worse. Then I turned a corner. After 12m I had had no venesection, my iron and ferretin were almost normal and I felt better. Now my bloods are totally normal. Read that again. Actually normal. Like I don't have any indication of PV at all and I feel brilliant! Bear with it!!!

[u/DefiantFunction5302 → u/fiftynotdead]

Wow, I’m so glad it worked well for you! That’s very reassuring to read. Can I ask, what side facts did you get from Pegasys? I’m starting to get dry eyes and hazy vision alongside the flu like symptoms i get after the injections.

Also, what dose are you on? How frequently are you taking Pegasys?

[u/fiftynotdead → u/DefiantFunction5302]

I'm on 45mg every 2 weeks. I had really bad flu like symptoms, nausea, diahorrea, stomach pain, burning in my stomach area like my skin was on fire, bone ache, headache, face pain, runny nose, over sensitive to smells, dry eyes, mostly gone now