Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of scintillating scotomas with increasing frequency at almost weekly. Aspirin cut this to approx. 90 days! Over the next three years increasingly struggled with fatigue and brain fog. I could be very energetic for a few months or very lethargic. Started having venesections as a test and these helped immensely. Although the balance with low iron was a challenge with very similar symptoms.
In spring 2023 my consultant asked if I'd consider Hydroxy or Pegasys to see if it helped. Being a relative youngster I didn't expect this due to age and risk. I certainly didn't expect Pegasys to be on the table. Like many MPNers we do our research. Even if it's years down the line. I'd probably already made my choice. Resist taking Hydroxy as long as possible in the first instance.
My consultant also asked if I'd like a second opinion at The Christie in Manchester. I'm lucky, it's still very local. My reaction was "what, with Prof. Sommervaile?" answered with "yes, I have discussed your case from time to time" It's was heartwarming to know my consultant discussed my case with the 'experts'.
So, I started with a fresh pair of eyes in May 2023 and the dreaded bone marrow biopsy. Which although unpleasant wasn't as painful as feared. The BMB showed nothing unexpected. My allele burden was 24%. I also got a free upgrade from ET to PV (sorry if that sounds flippant). My HCT has never gone beyond 0.49 so I have a view that my ET / PV is possibly blurred.
Now to start Pegasys. I delayed this until September incase of adverse side effects during the holiday season. So here goes. Start dose 45mcg
The nurse demonstrated dose one and I felt pretty terrible with flu like symptoms that first week. Then it was my turn to self inject. Despite not feeling great I trusted that the body will adjust. Week two was a little easier. Then on the eve of dose three I finally got covid. It's add to say this was a relief. Yes I felt truly awful for a week but I knew it wasn't the Pegasys. By dose four all was fairly ok. I could feel a bit off a day or so after but paracetamol helped. I'm now at week 19 and still on 45mcg. It would have been increased at week four but was left at 45 due to the covid infection.
At this point I do feel a lot clearer in my head and have more energy (or less bouts of fatigue) It's always hard to tell as I tend to use any energy I have. I'm no good at putting my feet up. So I may still be tired but I'm doing more. I certainly take fewer afternoon naps.
In conclusion. I'm glad I went ahead and tried Pegasys. Once over the prospect of self injecting and the early flu like symptoms everything is moving in the right direction.
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Crossefield
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That is very good news. It sounds like you have a really great MPN care team. Embracing shared care with a MPN Specialist is always a good thing. You are proving that educated and assertive patients receive higher quality care. Kudos to you for good decision making.
Thanks Hunter. Your posts are often some of most informative and helpful to many of us. Think I started milk thistle after reading your experiences. It's preemptive and my consultant approves even if my liver function is OK.
I received the same "upgrade" to PV that you did, but it took me 20 years of ET before the change occured. It sounds like you are on a very logical and well thought out treatment plan to manage the PV. I love the notion that you are paying attention to how your body feels and not just the numbers. While I still use HCT<45% as my target, I am willing to give the Besremi a bit of time when it looks like that might work. Quality of life matters just as much as preventing thrombosis.
I'm so glad to hear that you're doing well, and don't apologize for your excellent sense of humor- we have to take the good feels wherever we can find them. I rather liked the 'free upgrade' comment.
I know what you meant about it being kind of a relief to have gotten Covid as something else to attribute your side-effect vs. symptoms to.
I have only had any apparent side-effects from my Besremi once.
On a day after one of my middle-range dosage increases, I suddenly awakened with profound fatigue, body aches, and generally felt like poo.
Tylenol/APAP, fluids, and rest had me feeling better after just the next day or two- BUT I was really just happy that I finally had some evidence that Besremi was doing SOMEthing, [really ANYthing] to/for my body.
Prior to that, and i have to admit- ever since I have not had any side-effects at all, and the subtle, but I think significant, effect that my Hct has been maintained in the 45-49 % range without any phlebotomies since once in mid-2023.
The Heme MD's told me a few times during that period that they'd prefer it if I got drained [when my Hct was in the above 45 % range], but each time, I was able to temporize and the next level was closer to goal, so they relaxed somewhat.
It helps that I was able to find a rapport with a local Heme/Onc PA , who has been in the field for a couple of decades, and is thus a lot less panicked by a blip in my levels [as she called it].
Maintaining hct was a challenge. At one point I changed my target from 45 to 46 because taking blood at 45.x left me feeling worse. So I've refused venesection at 46% and returned a month later when I'd naturally dropped to 43%. I think we know our bodies and get to a point where we know when a venesection is needed.
Totally have the same worldview- and as Onco360 never got my Heme/Onc's Rx, so I ended up with 3+ weeks between doses- we'll see what it looks like later this week.
Glad you're over the covid and thank you for sharing,your experience of bouts of fatigue and tiredness. I feel like I've been hit by a bus, this week, so it's really helped knowing these bouts of fatigue can come back. I thought I'd overcome them. I am also very good at chilling but today, I going to try a walk, after an early work finish 🤞🤞
Great to hear peg is working for you, keep us posted plz.
Thanks, I plan to update now and then. I've learned a lot from this forum so I'm more than happy to repay.
My fatigue can be random. I call it my wave of sleep. I can only compare it to very long coach trips as a teenager without sleep. Eventually sleep always wins without question.
I'm lucky that I can work part time around it - or not work if I've overdone things. But if I push too far and work three days then by day three it can be too much. Then the brain fog is hardest and things need explaining multiple times to my glazed over expression.
I'm going in this morning for my first Peg dose after 7yrs of venesections after a PV diagnosis and me pushing back on the prospect of Hydroxy after iron depletion has become too burdensome.
I'm nervous to self inject but I'm sure it will be easy enough overtime.
Great to hear it's working for you I'm hopeful I will see a similar upside.
Sounds like we have very similar paths and mindsets. I was quite nervous about the injections. I watched the clinical nurse specialist insert that first syringe and didn't feel a thing. At that point I felt more comfortable with the idea.
Good luck today. Hope all goes well and you take well.
Do not sweat the self-injections. They are very easy and can barely be felt.
I really liked the way the nurse trained me to do them. She stuffed a bunch of exam gloves into an exam glove. This created a fake roll of skin to practice on. I prepped a syringe using saline. I held the fake skin roll to my abdomen then practiced doing the injection. Super easy! It only took one try to learn. I immediately did my first real injection at that time. Note that it is a good idea to do your first injection under medical supervision just in case of a very rare severe reaction to the first dose,
great . It’s a good drug . I stay on 45 monthly now . Only get shivery first 24 hrs after injection then no symptoms . I inject mornings as works through system quicker if active. I never got any injection practice as they just gave me the injections to take home to do .🙈. I read up online …..
I just throw an ice pack in skin beforehand & feel nothing but moved to skin on lower stomach to inject from leg. All going ok . Like you I got advice from a very good MPN.
Hi I'm in the North West too don't Prof Somervaille and just started Peg. On 45mg and interested in your journey. Sheet 4 weeks no change to platelets but I do feel flu like most of the time.
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