hi all,
I’m about to start the next stage of my treatment journey, 45mg Pegasys fortnightly. I’ve picked up the meds and just waiting for my remaining blood tests to come back before I start.
I’ll update this thread over the next 12 months with various updates from how the first injection went and side effects, and blood counts etc.
hope it can serve as a useful resource for others..
Steve
Hi Steve - this is a coincidence as I am just thinking about the possibility of starting this myself as my wbc remain in the higher realms (c 15m) and plt at present a little lower than they were at 800 or 900 - yet I am concious that after 7 years aspirin and vene, that perhaps its time to sample the meds and see how I get on. what drew you to commence the meds, were you on a medicine prior? I am a lottle anxious about poss side effects but you can only try it and see. I had hoped for Besremi as this seems now the better option for ITF users, but in UK it still comes at a cost which is unpalatable for our NHS resources. Had an appt with 'Elfin' one of Prof Harrisons team about two weeks ago and have taken the plunge of taking a VAF test which I have not yet had, I had to really push for it, but thought it would give me a marker of where my condition is actually at, as far as you can tell.
All best with the meds Steve and let's keep posting the journey as we may need the extra support right now. I prob won't start til Oct, as I have hols planned for mid Sept.
Best wishes Sarah
Hi Sarah,
I’d been thinking about it over the last year or so.. I guess “watch and wait” didn’t really sit well with me especially as I’m still pretty young (42) diagnosed at 37…
The decision to go on the meds was a joint decision with the team at Guys. Although I’m still classified as low risk and the formal guidelines prescribe only aspirin and venesection for low risk PV, they felt the evidence in starting Pegasys whilst young is compelling enough, even in the low risk groups, coupled with the potential disease modifying outcomes for some..
They also felt being Jak2 only gives me a good chance of responding well…
So here I am now.. a few days off my first jab… the prospect of being on meds for life is the hardest thing to get my head around.. however I see this as the best available therapy right now.. and taking an element of control back…
Also who knows what will be available in 10 yrs time… So whilst there’s a prospect it can do good for hopefully a long while whilst other research advances.. and it can reduce my 3 monthly venesections then I’m all in!
Best of luck with whatever you decide..
Steve
Thanks Steve, yes we are on the same page for sure with our reasons. I am not sure if I am JAK2 only, would I know that, nothing else has ever been mentioned.... perhaps the VAFF reveals this?
I too am optimistic that better meds, or a cure are around the corner and (as I study astrology there are some indicators of great medical advancements esp in the area of bloods!!) believe it will be sooner than a decade - I am planning around 3 or 4 years - ever the optimist!
What scared me a little is the in depth letter that I was cc d in to my local hospital team outlining my counts, but also outlining in detail some of the misshapen cells, some with 'left bands' which didn't sound promising - I have an appt at York hospital this Fri so will be asking more about that as I was a little alarmed by what I read, but I guess it's seeing in print results which are 'abnormal' yes even after 7 years I am a bit in denial!! So as you say taking the ITF is a bit of taking back some control and optimising my energy levels if nothing else. I used to feel so full of energy like many of us who post on here, was certainly of the work hard play hard mentality.
Best of luck and sending you pos vibes for this next step of the journey - you dive in first Steve, ha ha, I'm right behind you!!
Sarah
Steve,
So much of what you're saying here resonates for me - except that I did "watch and wait" from age 44 (diagnosis) until age 60, when a new/better doctor encouraged me to try an interferon. I hadn't been reading enough on my own to know this was an option. It seems to me that trying the interferon when you're young is a good way to go - because of the potential disease modifying outcomes, in particular.
I wrote more about my journey here, and this might be helpful for you as another person who was young at diagnosis: healthunlocked.com/mpnvoice...
Here's the last paragraph of my post: "Also, especially if you were diagnosed at a young age, talk to your doctor about treatment, other than phlebotomies. Don't assume that because you feel good and tolerate the phlebotomies that nothing is going on inside that bone marrow. These cells are sneaky. They're reproducing, even if we don't feel it. My only regret is not getting on Pegasus as soon as it was a treatment for PV."
Best of luck to you!
Hope it works well for you. I’ve been on Pegasys for 9 years now - it’s worked very well to control my blood counts, with no significant side effects and I’m now just on a low maintenance dose every four weeks.
Hi Steve, I’m 61 been on Peg Interferon for 7 years. It’s got my numbers down from 1250 to a steady 270. I started on 45 mg per week and I am now on 90mg every 3 weeks. The only side effect that I get is muscle aches at night and some night sweats occasionally. Not knowing what side effects I would have, if any, I decided to do my injection before I go to bed on a Monday meaning if there were any side effects it would be whilst I am at work and it wouldn’t ruin my weekend. I take 2 paracetamol every night before bed to take the edge off of any muscle aches and that seems to do the trick. Physically I haven’t been affected and I used to cycle to work pre pandemic and now exercise regularly. Bottom line is it’s a different experience for everyone and you have to work out what’s best for you. Go into it with a positive mind set and don’t overthink it. Good luck I hope it goes well.
Jocko
Hi Jocko, Muscle aches and the occasional night sweats seem to be quite a common side effect, but not one I’m particularly concerned about.. like you I’m going to continue keeping myself fit and active as that’s always been key for me to maintain a healthy body and state of mind..
Thanks for sharing your experience. appreciate it!!
Hi Steve, I’ve been injecting Peg since Dec23 and haven’t had any major problems. My platelet count normalised very quickly. I’ve managed to stay on 45mcg now injecting fortnightly. I’m really pleased I chose Peg as many are not offered it. Best of luck Steve and keep us posted. 🤞🤞
That’s great to hear!! Glad you’re doing well! And thank you! Will def keep you posted!
Hi Steve_Essex x @ Roxanne22
I started Peginterferon in Nov 23. Honestly, I wish I had started it sooner. I kept putting it off, thinking of the side effects, however, as I was doing this my platelets were increasing. Eventually I started 45mg weekly with a 860 count. Slow to respond at first, I am now alternating 135 with 180 dose, 2 weeks ago my platelet count came back at 390 🙂.
My haematologist advised 2 paracetamol 30 mins before injection, something I still do, not sure if it helps. He also advised to take in the morning, just incase I needed any support after, as the clinic would be open. At first I felt nauseous but never sick. A few chalky sweets helped, I do love a loveheart 😉 Fatigue is my main side effect, but you can either rest or push through, you'll soon know which it needs. And now some joint aches, which pass or are helped with paracetamol.
I think it's reassuring, from the forum posts, the success with interferon. My next steps will be to find the maintenance dose. I am still working and enjoying time with family & friends. Yes, I nay need a rest after work, bonus someone else cooks for me now 😂 but as my doses decrease I'm looking forward to a bit more energy. We're all different, with different experiences, but I thought I'd share mine, hoping it helps.
Hope all goes well for you both. I'll look forward to your updates.
Lx
Thank you for sharing your experience! It’s great to hear you’re doing well and responding! Long may that continue!!
Steve
I hope all goes well for you too. There are some MPN face to face forums going on, around UK this year. I've booked one for Nottingham next month, through Eventbrite. Here's a link for more info
eventbrite.co.uk/d/united-k...
Looking forward to your updates. Take care x
it’s a great treatment . Been on it 18 months now on 45 monthly. Found it much better to inject mornings as any effects are minimal. Lots water & excercise. May feel a bit shivery on first day nothing more. I now don’t get that either. Usually I do it morning at a weekend & everything normal . Travelled around World with it & all good just keep it cool with bit of ice pack until I reach a fridge . Julia . Exeter .👌
Hello Steve - like others who have replied, I resisted Peg for quite a while. I am CALR and was diagnosed in 2016. I was only on aspirin until late last year. I passed 60 and was resistant to starting on any 'lifetime' meds but, last November I was 63 and I also saw first hand the devastating effects of having a stroke (my Mother in Law) and so my approach to the risks of a permanent 800-900 platelet count changed as a result. I had been a patient at a Haematology department (NHS) with no MPN specialist - so I pushed my GP for a referral and my new London based consultant advocated Peg for me. I began in November with much trepidation - it is a shock reading the side effects list ! To begin with it knocked me out for a couple of days each time (I was on 90 mg) but, like others, I have got used to it and I now suffer some aching and I also think my hair is a little thinner. I prefer to inject in the morning when due (I am currently on every 16 days) as I find I don't sleep well if I inject in the evening. As someone else has said, it may not be for life, as developments and advancements happen all the time. Best of luck.
Hi SteveStarted Pegasus in Feb this year 45mcg every 7 days...platelets count came down, now taking every 10 days. Now on 6 monthly reviews. Initially had weekly blood tests and now also at 6 months (week before the next review)
Initially had a few common side effects, hot night episodes, sleeping badly, more pees(but I put that down to drinking more water than usual!), initial headaches that stopped after the 2nd/3rd injection.
No change fitness wise as I'm a pretty active for a 70 year old...but I no longer get dizzy, have eye focus loss, dodgy heart beat and sudden cramp like pains that occur anywhere (probably due to the blood clumping?).
All the best and hope you see improvements too.
hi Steve, I will take my 6th weekly 45mcg dose tomorrow night. I take 2 Panadol 30 mins before I inject and no problems. I didn’t tolerate Hydrea well at all and so the few small side effects I’ve felt with Pegasys feel very minor.
Twice in the night I’ve felt a bit nauseous tho I’ve been able to roll over and go back to sleep easily enough.
Once, a month in, I was very teary for a day.
I do get some leg aches and my hands can feel arthritic at times but it doesn’t linger. A couple of mouth ulcers tho they cleared fairly quickly with rinsing my mouth with Savacol (Chlorhexidine).
I’ve had a couple of night sweats. None of the symptoms have dragged on for me to feel the need to take any pain relief as suggested by my haematologist.
I had my bloods read last week and both my haematologist and I were surprised and elated that my platelets had come down 200 in a month. It was not expected to get any results for a while on a low dose as we decided to start low and slow.
So once the platelets are in the normal range, it was suggested that we could extend the low dose to 10 days then a fortnight, month ….
So Pegasys had been a positive experience for me.
It’s easy to inject. I am left with a red ring on my abdomen in each place I’ve injected so far. I was surprised they haven’t disappeared tho I see this in the side effect section of the paperwork as well. It’s not a problem, they don’t hurt.
I have autoimmune issues so had tests done for those to get baseline bench marks for the future. Also had my eyes checked.
Wishing you a good encouraging start with Pegasys 🤩
Good Luck to you Steve_Essex! I’m Jak-2 ET. I switched from Hu to Pegasys 16 months ago, and it was a good decision. Be aware that some folks respond quickly on a low dose, and others take longer and a higher dose. For me, I started at 45 mg every other week and slowly titrated up, I did not respond until I got to 180 weekly… but then my counts came down pretty quickly. It took 7 months to get a responses. I’m now down to 90 weekly and holding steady with all counts WNL I still get my blood drawn every 4 weeks and may continue to titrate down if needed. My VAF went from 29% to 14%. I never had any real side effects to the IFN and I think it was the low slow approach that let my body adjust to the medication.
My point is … be patient, go slow. It’s worth it. Good luck!
Thanks!! My VAF as of last year was 15%, platelets tend to range between 800-1000, HCT always borderline 45.5 prompting venesections.. so hoping even with time and patience i can achieve a reasonable reduction, get under that threshold for venesections, and possibly see a VAF reduction..
I’ve seen others posting graphs with historical trends.. as soon as i have several months of data I’ll do the same and continue doing so .. which may help others in their future consideration and understanding.
thanks for taking the time to share your perspective!
Best wishes
Steve
Steve,
Good luck, I am 5 years in at 45mcg every 4 weeks. I started with once a week, and my platelets now consistently stay under 200. No side effects.
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