Sudden increase in hematocrit while on Pegasys?

[Alexbits]

Before I started Pegasys it was in range form 46.5-50 max with RBC 5.4-5.6, platelets 600-800. On weekly 45mcg Pegasys for 6 months it came down to 43 and RBC 5.1, platelets 200. Then I switched to 10 day interval between injections, and it raised a bit to 45 at first and then it was gradually decreasing to 44.7 for past few months with RBC 5.1-5.2. But today, I've got my monthly FBC results and hematocrit raised to 47.8 and RBC to 5.5 and platelets from 190 to 234.

I don't know what to think about this. Did anyone experienced sudden increase of hematocrit during Pegasys treatment?

[Manouche]

6 months ago,I had the same problem with my weekly 45mcg. My HCT suddenly raised to 46, then 47, 49, 52 in about 5 weeks interval. My haem advised me to inject 90mcg weekly for the next 3 months. It stabilized the HCT but it didn’t lower it down much. I now have weekly 135mcg for 3 months. Everything went quickly back to normal. All counts are within normal range. Not a single phlebotomy in the interval as it would counteract the effect of INF.

Contrary to popular belief, a high dosage of Pegasys (if well tolerated ) is preferable than a low dosage (better long term molecular response)

[Alexbits in reply to Manouche]

Hi Manouche. Thank you for the details! Unfortunately, I have another problem, my liver is pretty sensitive to Peg, ALT/AST raising along with Ferritin. That's why we adjusted the dose to 45mcg/10 day interval and this fixed my liver/ferritin problem. So I'm not sure how the higher dosage might affect me. I will discuss this with my haem.

[Manouche in reply to Alexbits]

I also had problem with my ALT/AST when I started Pegasys, after the initial phlebotomies. Strangely enough, after about 4 months, the high ALT/AST count gradually normalized and kept going down as I increased the Pegasys posology... Meanwhile, I stopped completely taking vitC supplement, ( and of course not a drop of alcohol) as it can affect the liver enzymes. Who knows, it could be the reason why the problem disappeared...

[Alexbits in reply to Manouche]

I see. That is quite interesting. What was your initial RBC/HCT? (before Peg).

[Manouche in reply to Alexbits]

The initial HCT was 65,9 an RBC 8.3...Phlebotomies were stopped when I reached 47. It went to 48 the week after and then suddenly to 44, 43...38 with Pegasys 90. Unfortunately I developed thrombopenia and the INF dose had to be lowered at 45. It normalized quite quickly tough. Never had thrombopenia since then 🤞

[Alexbits in reply to Manouche]

Wow. Impressive. Thanks for the info.

[MPort]

Hi,

I experienced swings in HCT for maybe 5 years after starting Pegasus. The dose and frequency were adjusted and I had irregular venesections. After about 10 years I stabilised and stopped having venesections. I have managed this for about 5 years. But I keep my HCT at around 38. Once it goes to 39 it increases suddenly to 44 and I need a venesection. I am on low dose Pegasys. I used to be 45 every 10 days but was encouraged to go to 90 every 21 days. This has worked. I still react sometimes to the injection - worn out the next day and always have skin rash on the injection site which lasts for a long time. In fact I know where not to inject after 21 days. I persisted with Pegasys even though it hasn't been trouble free. I am interested in Manouche's comment that higher dose of Pegasys gives better molecular control. I hope to have an allele burden test in early October so that will maybe show something.

[Alexbits in reply to MPort]

Thanks for sharing. This is helpful.

[Manouche in reply to MPort]

High dose efficiency depends whether you are JAK2 homozygous or heterozygous. Small doses can also work well. Personally, I subscribe with the concept of dose modification rather than dose interval. My haem prefers to change the dose and keep weekly injections. It makes sense as the half life of pegINF is about 5 days. Keeping short intervals between injections allows for a more regular and higher bioavailability. High bioavailability is precisely the strength of the new ropeginterferon most of us could hopefully get in the next few years 🤞

[Alexbits in reply to Manouche]

Yes. I checked on BASREMi some time ago. It was around 3000 EUR per syringe at that moment, without insurance. It's excellent drug according to my haem.

[Manouche in reply to MPort]

Hi Mport,

It’ll be interesting to know your allele burden variation. It’s possible to eradicate jak2 after 12 years in some cases.

« For the patient in Figure 8, the model predicts that 12 years of treatment is needed to eradicate the cancer. However, the lower limit of detection is reached between year 4 and 7 depending on the measuring accuracy. Discontinuing the treatment before year 12 would sooner or later result in a relapse »

« Interrupting the treatment after month 8 shows a relapse of the cancer, and the pre-treatment JAK2V617F value is reached after 1.6 years. In contrast, prolonged treatment in the model even with a lower dose may eliminate the cancer over time »

mdpi.com/2072-6694/12/8/211...

[MPort in reply to Manouche]

Hi I so agree. I hoped to find this out last year. And now hope it will be next week. I will let you know results. I don't know if they are available during consultation or come in later. I have been watching the Ash 2019 vidoes and the Australian 10 Sept MPN Day seminar. So much information and insight. My poor brain is reeling. But they recommend knowing from Allele burden test and bone marrow test is vip to keep track of situation. I was getting anxious about progression but your info suggests alternative. I will read your link in detail later today. Thank you for this useful info and hope. Mairead

[Susana7]

Hi, I have been on Peg for PV for 5 years. Started at 90mcg/weekly with 1500 platelets and 0.50 HCT. Gradually cut back to 45mcg every 3 weeks as platelets stabilised at 400 and HCT at 0.40, and also to protect the liver as, like you, my enzymes are always elevated. The counts oscillate and recently I increased injection frequency to 45mcg every 2 weeks as platelets rose to 490 and HCT to 0.44. I hope this brings the counts down as I really don’t want any dose increases - I had hair loss at 90mcg and very sore mouth. In your case, you could simply go back to your initial frequency for a while and see if that sorts it. Good luck! X

[Alexbits in reply to Susana7]

Thank you for your reply Susana!

[Ellafea]

I started on 40mcg and wasn't achieving the best results, so my doctor upped me to 90mcg and booked me in for a venesection. This seemed to do the trick and my levels have been stable since. I was only diagnosed at the start of this year and have been on the injections for around 3 months. I'm 27, so I may be the youngest member of this group?!

[Alexbits in reply to Ellafea]

Hi. Good it's working for you. I probably had this problem since late 20s. But diagnosed at 34 after symptoms worsened.