Pegasys

[hall2]

Just come out of appointment with haematologist and platelets now in 770s and I’m 62 so high risk! He wants me to start Pegasus. I’m a bit scared to say the least especially about side effects! He mentioned possible flu like symptoms and more rarely depression.

[francesb]

Hi, I've been on Pegasys plus Hydroxycarbamide for about a year. It's a slow acting drug so start low on a dose of 45 and see what happens. Flu symptoms? I do go hot and cold sometimes on the first day but that's all I can pin down. I ache anyway which I believe is either a drug side effect or illness symptom and have no energy but again this is an illness symptom. In summary I've not really had any problems with Peg side effects. Good luck.

[hall2 in reply to francesb]

Thanks very much for your reply it's very encouraging!

[CommonDaisy]

Hi there,

A lot of people are changing to Pegasys lately and as you’ll read on this forum, many of us are handling it really well!

I’ve been on Pegasys for almost 6 months. The first couple of injections I got some night sweats and trembles but nothing too bad- I went in expecting to be wiped out in bed the next day, but I certainly wasn’t.

Start on a low dose, take some paracetamol the first couple of times and I’m sure you’ll be surprised (like I was) that it’s nothing to be anxious about 😘

[hall2 in reply to CommonDaisy]

Thanks for your reply. It puts my mind at rest a bit!

[JSKly]

Hello, I began on 90 mcg Pegasys and have had little if any flu like symptoms. I believe I have experienced depression but that could be attributed to other things.

Now and again some bone pain but again I may we’ll have had that on any drug.

[hall2 in reply to JSKly]

Thanks for your reply. It seems like people tolerate this pretty well!

[Greenbus99]

Hello, my teenage son is on Pegysys and has gradually increased to very high dose of 180 mcg weekly. He has had no side effects what so ever😀 He tolerates it very well. He is Jak2 positive PV and started pegysys when his platelets hit 1500 and after he had 2 further TIA'S . Sadly it had not brought his platelets down yet but we were told it can take a long time to see results, he is on it 11 mths now. The positive is has not had any further TIAs, he feels very well, seems to have more energy. I would suggest it's worth trying it, you too may well tolerate very well. Good luck and take care.

[hall2 in reply to Greenbus99]

Thanks very much for your reply it has helped me to not worry so much!

[Susana7]

Hi, i’ve Been on Peg for 3.5 years for PV with minimal side effects. I started at 90mcg weekly (my platelets were 1.5 million) and slowly reduced over time to present dose of 45mcg every 3 weeks. My counts are normal now. I only had very minor flu-like effects with the first injection. No depression. At 90mcg I noticed temporary hair thinning and frizziness and dry, sore mouth. No side effects at 45mcg, It is important to start at a low dose to minimise side effects (e.g. 45 mcg). I inject at night and took paracetamol the first few times. If you apply EMLA cream on the injection site, you won’t feel a thing and it takes the dread of self-injecting away! If I were you i’d give it a try, Pegasys has worked wonders for me! Best of luck, Susana x

[hall2 in reply to Susana7]

Thanks for your reply it’s very encouraging! I hope to start on a low dose!

[charl17]

I have been on Pegasys for 12 weeks and now do 90mcg every week. The injections are painless. I experience some fatigue, sweats and chills the first 24 hours. If I had a job, I would inject Friday night. My guts are a little loud. I am a little irritable and intolerant of frustration. My local hematologist says based on my CBC alone, he would not suspect any disease and I think he is pleasantly surprised. My hematologist at Moffitt Cancer Center in Tampa still wants my hematocrit to drop from 48 to 45.

[hall2 in reply to charl17]

Thanks for your reply. Do you inject once a week or twice? Do you think the irritability is due to peg?

[Osteomyelio in reply to charl17]

I live near Tampa and just started with Dr. Komrokji at Moffitt- he has a lot of good knowledge about MF and ET. Impressive

[charl17 in reply to Osteomyelio]

Dr. Komrokji is my specialist too. My wife and I are very happy with him. He is a very busy and caring man. I think some people would find him a little distant. In this mpn business, expertise trumps all and he knows what he is doing. My care is coordinated with Dr. Miguel Pelayo in Lakewood Ranch. Pelayo and Komrokji know each other well. Pelayo is good too.

[Osteomyelio in reply to charl17]

Thank you! Dr. Pelayo office is 25 miles south of me. Are you improving with Pegasus? I see Dr Komrokji in 4 weeks again. He mentioned he may start me on it. It seems scary, but I trust Komrokji’s opinion.

[charl17 in reply to Osteomyelio]

Dr. Pelayo is close to the University exit of I-75. They are moving the office to a site near the Route 70 exit - maybe 6 miles closer for you.

I consider myself to be doing well on Pegasys although I certainly do deal with side effects. I felt he was a little aggressive in pushing up the dose but his recommendation has turned out well. I am back to 90mcg/week after 9 weeks on alternating 180/90. The final dosage push was to get my hematocrit from 47 below 45 and as of yesterday I was at 42. So I am back to 90/week. All my blood counts are where he wants them.

I will try to figure out how to communicate privately so we can get into more detail, if you have more questions - which I imagine you do.

[charl17]

One injection of 90mcg per week. The irritability is subtle. To be aware of it is helpful in managing it. I believe it to be related to the depression some experience in that depression seems to have something to do with how we handle anger. It's like being grumpy when you are sick.

[jon1972]

Be careful about ramping up the Peg too quickly. I think it is fairly well tolerated by most but there's always the chance you could end up in the smaller percentage that has more serious side effects. I was doing fine in the 45-60mcg range and I ran into some GI issues at a higher dose. I've backed down to 45 again and I'm doing OK along with some non-steroidal anti-inflammatory drugs. I will be taking it very slow if I do decide to move above 45 again in the future. The higher the dose, the more likely side-effects will occur.

[hall2 in reply to jon1972]

Sorry I should have asked, what are GI issues?

[hall2]

Ok thanks. I don't know yet what the haemo will want me to start on.

[jon1972]

GI = Gastrointestinal. Colitis in my case.

[lynxfluff]

Hi! I hope you do as well on Pegasys as it sounds like most of us have.

I’ve been taking it at 90 mcg/week since September 2018, and it’s really helped tremendously with my PV. My HCT, RBC, WBC, and platelets were all high, and I was symptomatic. They were in normal range within just a couple months. (My physician says that’s an abnormally fast response, but I’ll take it. LOL)

The only time I experienced a side effect was the fourth day after taking my first shot. I was SO itchy that I had to go home from work. But it passed by that evening, and it’s never happened again.

Best of luck!

[hall2 in reply to lynxfluff]

Hi thanks for your reply which I find very encouraging! I'm still waiting for my appointment!

[Zar77]

Hi I started my first treatment on Tuesday. During night I felt my legs were aching and body felt as if I was getting temperature straight away I took paracetamol to sleep off the symptoms. I was wake most of the night. Next day I was fine. So far good.

[charl17 in reply to Zar77]

In my experience it gets easier to fall asleep after injections. I think I learned to tune out environmental distractions. At first I seemed to be hypersensitive to external stimulae - the pillow, the temperature, the a/c cycling on and off, street noise, etc.

[hall2 in reply to Zar77]

Hi I had my second dose yesterday and felt tine today. Went for haemptologist appointment and they've doubled the dose from next time to 90mcg once a fortnight, so will see how that goes!

[hall2 in reply to Zar77]

What dose are you on?

[Zar77 in reply to hall2]

Hi I just injected myself with the second one it’s 45 dosage