I am 54 next month and was diagnosed 3 weeks ago with ET with CALR+ after blood counts of 1220 and 1250. I had my first and very constructive meeting with my MPN consultant today. I had a blood test 3 days ago prior to the meeting and my blood count was 1012. The consultant said the counts will go up and down. I had a heart value replaced 15 years ago and I am on warfarin for life. About 4 years ago I was put on aspirin by my cardio consultant after I had lost sight temporarily in my left eye (diagnosis of Amorosis Fugax). this has probably masked the ET symptoms. The MPN consultant is thinking of putting me on Pegasys Interferon which I don't know much about. I have been told it's a weekly injection. As I have an upcoming holiday and my consultant is also away I have been told I will see him again in September when I will probably start on the Interferon. This was exactly what I was hoping for before the meeting as I currently feel great and did not want to start treatment prior to my holiday without knowing what side effects I might get.
My question is Pegasys Interferon - whats it like to take ?
Can anyone give me advice, tips, pointers in advance of September ?
Thanks in advance...Jocko
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Jocko
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Hi Jocko - I'm 61 with CALR+ ET and have been on Pegasys since October 2015. Platelets then were 1100+ and have come down to mid 300s, with other counts all OK - I now just inject 90mcg every 4 weeks.
My experience of Pegasys has been very positive - easy to use, effective and no significant side effects, just dry skin and a few mouth ulcers but those have lessened over time.
I started on 45mcg weekly to see how I reacted, then increased to 90mcg and stretched the intervals progressively to 10, 14, 21 and 28 days as my counts came down. Hoping to stretch to 6 weeks one day and maybe even try a break to see what happens to my counts then...
I do get tired but think that's more to do with age and a very busy life than the medication..!
I'd certainly recommend Pegasys and hope it works well for you too - my clinic has over 40 ET and PV patients using it successfully.
Thanks for the reply, that sounds really positive.i hope you get to 6 weeks soon. My consultant did say in some cases the condition can disappear, I think that's what he said, have you heard that ?
Do side effects kick in immediately or does it take a while ?
Yes I have heard that after a couple of years some people have seen complete remission and have been able to stop treatment but I'm not sure they've worked out yet why it happens in some cases and not others..! That's why I'm hoping to try a break some time and see if my counts remain stable. I'm in clinic next week so will ask again then...
Side effects typically appear within 24 to 72 hours of injection and fade over a similar time but inevitably each person's experience is a bit different. I've rarely had the flu type symptoms but do have dry skin and itching most of the time - I just use E45 and occasional antihistamines to manage those.
My wife has PV and was on Pegasys Interferon for just under a year which reduced her platelet count from around 800 down to 300 and her HB counts also rectified themselves. Her dosage and frequency was constantly reduced and in December 2015 she was taken off the medication as all her counts were so stable.
We are now 18 months down the line since being taken off the Pegasys (and any medication for that matter) and not once has her blood counts been anything other than normal. At her last hospital visit in June 2017 her platelet count was 298.
If it wasn't for the Jak2 positive test then she could almost be clinically classed as PV free. So for her Pegasys has been fantastic.
Initially she was having monthly blood checks but now it tends to be every 8-10 weeks.
Her doctor has actually said that some people with PV or ET are actually starting to live a longer life than people without any medical conditions. The reason being is that non-related medical issues are actually being highlighted, diagnosed & treated at a very early stage before a normal healthy person would even notice any symptoms.
I'm 43 this year. Been on it for nearly 2 years. Started off every week, now every 2 weeks. Apart from tiredness and sometimes flu like symptoms a few days after the injection, it's been pretty much hassle free for me. It costs me about HKD 500 (50 quid) per needle...it better be the best
Wow having to pay £50 a pop, I didn't think about people having to pay for their meds. I'm in the UK so currently I would get this free under our fantastic NHS. What happens if your dose goes up, does it cost more for you ?
I am the same age as you with ET CALR also, with platelets that go up over 2m, and have started it this year following 10 years on hydroxyurea tablets to control platelets. I tolerated that drug well until it causef leg ulcers. With pegasys Injecting is fine, but everybody gets different side effects and needs different doses so it appears hard to compare myself to others. It is definitely worth trying. I do notice some aches and shakes for a few days afterwards and some weeks I feel v tired too. whilst I think it is a very good and convenient treatment I am now having to take 135 mcg every 2 weeks now as the lower doses are not controlling platelets. Apparently other people get away with less to control similar levels of platelets. So try it snd see hopefully it will br good for you.
thanks for the reply. Looking for information it does seem that there are no clear patterns for any treatment. The thought of being long term on Hydroxyurea did scare me a bit which is why I wanted to start on something else. Obviously until I start some kind of treatment who knows what will happen. When my condition was first diagnosed I was told to stop taking aspirin for a couple of weeks. During that time I got symptoms of ET - headaches, pins and needles, pain in my fingers and toes, but when I started back on aspirin they disappeared immediately. It therefore appears that for me aspirin is helping me feel OK. So apart from the high blood count I feel pretty normal and if this condition hadn't been uncovered I would have kept on living in ignorant bliss.
Did you have any major symptoms that effected you before you started your treatment ?
I had headaches and fatigue mainly - I adjusted well to hydroxyurea and found it very successful for 9 years. The last year was problematic with the ulcers. Pegasus is good but I find the side effects more noticeable than hydroxy. But I can live with them so far!
Hi Jocko, I am also 53 and have PV with very high platelets. I spent one year on aspirin only as I had very few symptoms. Then my platelets reached 1.5 million and I was put on Pegasys interferon 90mcg/week. Now, 20 months later, and on a reduced 45mcg/week dose, my counts are all normal! 🎉 The plan is to start injecting every 2 weeks only, this Summer. Pegasys has been fantastic for me, I hope in time to achieve remission, some 20% of people do. I apply EMLA cream, a local anaesthetic that you can buy over the counter (or add to the Peg prescription) 30 min before the injection on the tummy, and it makes it totally pain and dread free 😊 (a tip from my nurse). As for side effects, I felt a bit dizzy and under the weather immediately after the first injection, but I inject very late on Friday nights so just took paracetamol and went straight to bed. That happened only that first time, I don't experience any immediate side effects now. As for more chronic side effects, I had only minor issues: some hair loss/thinning between months 4 and 9, at 90mcg, which subsided naturally; some cotton wool spots in one eye, that resolved naturally; and a very sore mouth for a while, which I am now taking a steroid mouthwash for and controls it very well. Apart from some extra fatigue, I feel great, work full time in a demanding job, have kids and mostly forget I have this condition. Best of luck to you, I hope Peg works as well for you as it has for me. Susana x
Hi Susana great to hear that you are so positive despite side effects, let's hope the 2 weeks comes round soon and you are a step nearer to achieving remission. Good luck.
Hi, i'm on Pegasys, had my 8th injection Wednesday, im on 90mg weekly. I take paracetamol 2hrs before my injection. I sometimes feel a bit rough 48hrs after, do have a few ulcers. But I'm getting there my platelets have gone down to 300 were 1000. Seeing consultant this Wednesday
Hi Linda that sounds amazing getting down to 300 after 8 injections. How often do they test your blood counts ? I'm guessing all being well they will try and stretch out the time between injection ?
I was on Pegasys for almost a year, but not for the same MPN as yourself.
Apart from light flu systems that could be handled with paracetamol and itch at the injection site - approx 1week after the injection - I had no other secondary effects.
I started off with a 'standard needle/syringe' packaging that a home nurse came to inject and progressed to a self inject 'pistol' that was pretty much painless.
Please tell me about the self inject pistol. I am using 180 syringe of Pegasys and having to decant 45mcg from it into a syringe. I invariably fail in this due to the damage hydroxy has done to my hands, particularly my thumbs. This Friday I ended up with just under 20 mcg instead due to squeezing too hrd on the Pegasys one and draining it down the sink!!!!! The hospital chemist insists there is no such thing as a 90mcg dose, which would allow me to just dispense with half and inject the rest, so I am stuck in this silly situation. even though my nurse says she has established its existence and ordered it in. Any ideas????
I just came off the phone to Roch who have confirmed this and I still can't get hold of it unless my doctor takes the time to contact Lloyds with this information and ask them to contact Roch direct. I will ask my specialist nurse to work on him on my behalf........
You are correct I am no longer on Pegasys. As I indicated I did (do?) not suffer from the same MPN as yourself - I suffered from MF +MDS-u and underwent a SCT almost 2yrs ago.
Whilst I was taking Pegasys my blood counts stabilised slightly, my immune system improved and my awful night sweats disappeared (to such an extent that one specialist even suggested that the future SCT being planned could be put off - 2 more renowned specialists confirmed that the SCT should go ahead though).
When I was taken off Pegasys to prepare for my SCT my health declined very quickly which confirms how well it worked for me.
Hi. I have been on this for a while and it is good. It has brought my platelets right down and I have had very little side affects from it compared to Interferon Alpha where I had lots. Take care on your holiday!
I am 45 and have ET for many many years. I am also CALR positive ( type 2 insertion ) , with grade 1MF ( reticulin fibrosis in bone marrow ).
I started with Pegasys in March 2017 : 45mcg every week and it brought my platelets very fast lower. I lived for many years with platelets between 1,2 and 1,5 million.
I take now 90mcg every 2 weeks, and it looks like we may change this also, into 45mcg every 2 weeks or maybe 90mcg every 3 weeks.
My platelets are now at 290K
The first 2 weeks I had a lot of dizziness, but was also my major symptom the past 20 years. This disappeared since my 3rd shot. I am sometimes a bit tired, but it does not bother me or have no impact on my professional life.
It can take a few months in certain patients to see real results, but it is just important to understand that MPN patients need to stay as long as possible on Pegylated Interferon, a low dose. It can improve your bone marrow quality, and I believe it is the best possible treatment for the moment. Good luck !
When you are interested, we have a CALR support group on Facebook : you can always join us by following this link : facebook.com/groups/1889866...
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