Pegasys starting dose

[Aelle]

Hi all! I got my prescription to start Pegasys due to my platelets being in the 1.5M range. I haven’t discussed the dose with my hematologist (not an MPN specialist) but I see now that she wants me to start with 90 mcg weekly. I am wondering if starting with 45 mcg wouldn’t be a better idea to let my body get used to the drug first. What dose have you started with?

[Jody00]

Hi I started on 90 pegasys interferon alpha last Wednesday,I didn't discuss my dose with haematologist,there are going see if this dose works out for me said there might need to up the dose or lower the dose depending on how am getting on has for now will have weekly appointments if helps. xx

[Aelle in reply to Jody00]

Thanks for your reply. How has it been so far? Not too many side effects?

[Exeter21]

I was advised to start on 45. It can then be built up gradually . I am still on low dose & now monthly as weekly gave me bad migraines . MPN advice is slow & low unless there is a reason otherwise . 👍

[Aelle in reply to Exeter21]

Thanks! How long ago have you started? Are you able to get an as good hematological response with monthly injections?

[Exeter21 in reply to Aelle]

I contacted MPN Dr. Professor Harrison & she is advising me on doseage. Local Haemotology put me on 45 weekly but had bad side effects with constant migraines. She has reduced me to monthly for body to cope . Currently fine on this doseage. 👍

[Aelle in reply to Exeter21]

good to hear!

[Jody00]

Hi not really, a little cold at moment I do get more headaches then normal which I take paracetamols, feel bit more tired but others wise feel okays now ,but 2nd inject due on Wednesday which I will take in the evening time incase need to sleep threw if I get any side effects like the first one which only lasted no longer than 24 hours.

All the best xx

[Wyebird in reply to Jody00]

hi, I found that side effects kicked in a few hours after the jab so I found 4pmish a good time. With every jab the effects diminish. It took a while. No side affects at all now Though Even now if going away for the weekend I might delay the jab.

[Notmyusername]

Hi Aelle, my platelets are similar to yours, circa 1400 and I'm starting in the next week or so on 90. The haematologist ( is a MPN specialist) did discuss this with me and his view was that dosage was very individual driven, some need more, some need less, so starting at a middle level made the most sense in terms of trying to find the correct dose more quickly. In that context it made sense to me. Good luck.

[Aelle in reply to Notmyusername]

Thanks, good luck to you too!

[Wyebird in reply to Notmyusername]

good luck

[ciye]

I started at 45 mcg and gradually upped the dose 45,67,90,120 then 130 I did find the side effects dose dependent...

[Aelle in reply to ciye]

Interesting, how often would you change the dose? Is your blood count where you want it to be with your current dose?

[Wyebird]

I started on 90 a week and 16 Hydroxicarbomide ( cut out 9 anagrelide)

I had a blood test after a week. The results were amazing so the Hydroxicarbomide were cut out in the second week.

Then because of my White BC I went to every 2 weeks. For a few weeks

Back to 10 days

Then 11 days

Every 2 weeks

18 months later -Tried every 3 but my platelets rose although well with in range I was going in a 6 week holiday so I went back to fortnight.

I’m hoping to try every 17 days soon.

Make sure you are monitored weekly for a few weeks.

Do let us know how it goes

[Aelle in reply to Wyebird]

Thanks for sharing! I am currently living in the NL, the whole system is based on optimizing cost efficiency so blood work will only be performed after 4 and 8 weeks…

[AndyT]

I started on 45mcg for my first week and as I didn’t get any side effects I went up to 90mcg from week two onwards, still with no side effects and stayed on that till my counts stabilised and I could both reduce the dose and extend the interval.

I’m now just on 45mcg every four weeks, which keeps everything nicely in balance.

[Aelle in reply to AndyT]

thanks for sharing !

[Wyebird in reply to AndyT]

brilliant to be on such a low dose. I do hope it continues

[gilded]

I started on 90mcg fortnightly and this dose hasn’t varied for the last 10 months. NHS.

[Aelle in reply to gilded]

thanks for sharing!

[Solyesh]

Hi I started on 180mcg for about 3 months and had immediate and amazing results (all bloodwork within normal ranges for first time in over a decade) but then ran into potential liver issues so we dialed it back and I am now on 90 mcg every 17/18 days....

[Aelle in reply to Solyesh]

Thanks for sharing!

[Hopetohelp]

I started with 45 and went up to 65 a month later

[Aelle in reply to Hopetohelp]

thanks for sharing!

[hunter5582]

I started on 45mcg of Pegasys, which is pretty typical. I did well on 45mcg, reaching the PLT goal in 8 weeks, starting with PLT 700s-900s. I only experienced minor side effects, some itching/rash and mild leukopenia. After about 6 months my RBCs crept up and it was clear a dose increase was needed. I would have ended up at 90mcg if I had not switched to Besremi at that point.

Here is a treatment protocol for Pegasys that indicates starting at 45mcg. Given how high your platelets are, you may well need a higher dose to get to target. If you have had a thrombotic or hemorrhagic event then there may need to be a more rapid reduction in platelets. None of us can know what your specific treatment needs are.

nssg.oxford-haematology.org...

Suggest you review your treatment goals, risk tolerance and preference for how to manage starting Pegasys with your care team. You may also wish to consult with a MPN Specialist who likely has more experience managing ET patients on Pegasys.

Wishing you success in the next stage of your journey with a MPN.

[Aelle in reply to hunter5582]

Thanks for sharing! Ideally I would consult with an MPN specialist but it is not so easy where I live.

[110srh]

Good morning, Aelle—my doc is an MPN specialist and he started me on 45 mg/week about 2 years ago once my platelets neared 1.5M. The expectation was that I’d ease into the low dose and titrate up after acclimating, but that never happened. My platelets dropped pretty quickly and were back to being within normal range within 4-5 months at the 45 mg dose. Only initial side effect was body achiness for the first 24-48 hrs, but that subsided after first 3-4 doses.

My WBC and RBC also dropped to below normal, though, so my doc had me back off the Pegasys to 45 mg every other week. Only long term side effect has been anemia/fatigue, but I also developed hypothyroidism shortly after starting the Peg (endocrinologist thinks the Peg really just exacerbated latent Hashimoto’s hypothyroidism), so now it’s hard to tell what is causing the fatigue—it is the ET or the thyroid? Or Pegasys? Also might be motherhood, lol, as I have three teenage sons wearing me out!

Good luck to you on the Pegasys—hopefully it is effective on your platelets with minimal side effects on the rest of you!!

[Aelle in reply to 110srh]

thanks for sharing! Nice that you responded rapidly to the drug. Do you know the type of mutation you have?

[110srh in reply to Aelle]

I have the MPL mutation.

[Aldebaran25]

I started with 45mcg in September and have now upped to 90 mcg. Had the shivers and flu like symptoms 24h after the first dose (45) but then less so, down to no side effects and now, with the 90mcg , I had no problems at all. I should say that I am transferring from HU and still taking it ( but have diminished the dose). I am now due to stop taking the HU altogether very soon (after the next blood test).

[Aelle in reply to Aldebaran25]

thanks for sharing! Nice to see the drug works well for you!

[william-Indo]

Everybody is a different.I am started at 135mcg and feel ok now.

Hopeful your body respond it well

[Aelle in reply to william-Indo]

thanks!

[Hisnet]

I started at 25mcg , 2 months later raised to 30mcg. Have been at 30 for over 2 years and all my numbers are good.

[Aelle in reply to Hisnet]

thabks for sharing!

[Emmyroos]

I started at 90 mcg/weekly and continue almost a year and a half later. Good luck with the Pegasys! I hope you see great results.

[Aelle in reply to Emmyroos]

thanks!

[Wentry]

Hi Aelle, I started on 45mcg October 2021 and stayed on that dose at my request as Pegasys can take a long time to see results for some people, no side effects and platelets in range after 10 months. My liver ALT is still slightly over normal on this dose but okay. I may reduce the dose after haem appt later this week as my whites and lymphocytes are getting low. It depends if your haem is worried and wants to get your numbers down quick or if there isn’t any rush (like me), I requested to start Pegasys, my platelets were around 800-900 when I started it but I was 59 so approaching the age (60) they would want to start treatment here in NZ.

[Aelle in reply to Wentry]

thanks for sharing!

[Island-Lady]

I started Pegasys six months ago after a bad experience with HU. Because I only weigh 110 pounds and I’m very reactive to medication, I started on 25 MCG, and have gradually increased it. My next dose will be 38 mcg. My platelets have been rising and not falling, but my hematologist is fine with my increasing the dosage slowly.My next dose will be 38 and I will continue to increase the dosage until my platelet count is down.

We all respond so differently to different medications and different doses. The good thing is that you can always adjust the dosage, depending on your reaction to the Pegasys and your results. I also have not been able to see an MPN specialist, and I am so grateful for this website and learning of other peoples experiences, it has been a lifesaver for me.

I wish you the very best in your journey!

[Aelle in reply to Island-Lady]

thanks a lot!

[Zeppelin11]

I started Pegasys two weeks ago. I was taking Hydroxyurea but grew a tolerance to it and my platelets have been spiking. Currently I'm taking 2 Hydrea pills a day and 90mcg of Pegasys once a week. No side effects and platelets are slowly going down. From what I have read, I do think slowly increasing the dose is a safe course of action. I'm grateful to not have any side effects at 90 however, everyones body is different. My first dose was 45mcg and I felt so good I was confident to increase it to 90mcg. I take Tylenol an hour before the injection and drink lots of water. Wishing you all the best!

[Aelle in reply to Zeppelin11]

Thanks for sharing! I read your post on the same topic, looks like our hematologists have some commun features

[ainslie]

the usual start dose is 45, unless there are reasons why you shouldn’t start at 45 it’s prob wise it may take a little longer but less chance of failing

[Aelle in reply to ainslie]

thanks!