Hi,
I have ET CALR and have started Pegasys 3 months ago. I am glad that I am not sufferring from any really annoying side effects but I am concerned by my platelet count. They were at 1500-1600 when I started and now seem to stabilize at 1200-1300, quite far from the ultimate goal.
How long were you in treatment before seeing a meaningful platelet decrease? Has anyone here had to discontinue treatment because of lack of reponse? If so, how long have you tried for?
Thanks!
not sure for platelets but a few months isn’t long, with reds it can take many months or even years although some get there in weeks, definitely hang in there if you are tolerating it well, there is also the possibility of increasing dose
Thanks! I’m already at 180mcg so not sure if I can still increase the dose
180 is high but some do go higher, if you and your doc agree it seems worth sticking at 180 as 3 months isn’t that long for Peg to affect counts
Yes exactly, probably worth continuing, I am just wondering how long is considered long enough to conclude that this drug is not for me. My hematologist is not an MPN specialist so I am trying to gather some experience before talking to her again.
Sorry you are not getting the response you had hoped for. Let me as you this, do you have any symptoms from having high platelets when are not taking anything? I have the same diagnosis and my MPN Specialist said he would have me on a spirin regimen (even if mine were in the millions) if I didn't have any symptoms. Unfortunately I deal with massive fatigue and always feel like I'm swaying. Pegasys was not a good fit for me so I'm back on Hydrea, waiting for the new medication (for what we have) to come out.
What dose of the Pegasys are you taking?
Thanks for your reply. I am very lucky that I have 0 symptoms from ET but my hematologist started to freak out when I crossed the 1500 bar. I postponed starting treatment for a year… I actually had several discussions to understand what she thinks the risk really is. I also did my own research and found that some specialists in the US were actually not advocating for Pegasys for low risk “millionnaires”. Sounds like the same philosophy as your specialist! Just wondering in this situation whether aspirin alone wouldn’t increase the bleeding risk too much.
Anyway, I ended up starting Pegasys, first week 45, then 90 and now 180 for the last four weeks.
What’s this new medication that you are waiting for?
investor.incyte.com/news-re...
Thanks for sharing! Definitely something to follow, I am wondering how long it will take before the drug reaches market approval.
Hopefully soon. My MPN Specialist is at the forefront (he is head of Hematology at Stanford) so I will share any updates I get. Feel free to follow me and wishing you all the best!
Nice, I’ll definitely follow you!
Interesting to read your post. I am one such "millionnaires" who continues to be treated with low dose aspirin twice a day and I'm considered low risk. (PV- Jak2)My Platelets hover around 1100 and whites around 18. I get drained every 3-4 months and only noticeable symptom is fatigue from time to time. This has been my regimen for the last 20 years. My body is extremely sensitive to any drugs. Started Pegasys 45 dose and my liver enzymes tripled immediately and I felt like I was on LSD. Mentally things were distorted and I was becoming depressed. My 45 dose was cut-in half to 22.5 but still had bad symptoms. Tried HU for 5 months and didn't experience any side affects but living in the sun in Arizona half the year nixed that pill. My passion is swimming laps outdoors in the sun and I have a family history of skin cancer. My MPN specialist Dr. Tefferi is one of the leading experts in the country on MPN's. He put me on the 2 aspirin a day. He thinks the jury is still out on the significance of allele burden and interferons as there is no documented proof thus far. It's important to have an individualized plan that fits you specifically. I'm astonished you can handle that high of a PEG dose. Are your liver enzymes okay? Best to you. Kerry
Thanks for sharing all this. I did read some papers from Dr Tefferi, he was indeed questioning cytoreduction for “millionaires”. My liver enzymes were fine last time, but it’s definitely something I keep an eye on.
Hello,
We share the same mutation Cal-R which generally presents higher platelets than the other mutations. I had similar numbers to you when I started my MPN journey and was initially frustrated with how slow my decline was with Pegasys was. Like you my dosage went up and up. It is known as a slow acting drug. My Haematologist added in Hydroxy to aid the decline and my numbers dropped dramatically. I took both drugs for around 6 months at which point my platelets were well with the optimal range. It wasn’t easy being on both drugs honestly. I then dropped Hydroxy and have been on Pegasys alone for 3 years and have recently dropped to 90 every 10 days. My last count was 199. This drug certainly requires patience which is difficult when faced with startling numbers but also remember that high numbers don’t necessarily mean you are more in danger of issues than someone with slightly elevated platelets. These days my side effects of Interferon are few especially as I take it less frequently. I’d suggest having a conversation with your haematologist about your options or consider asking for a referral to an MPN specialist.
I hope this helps x
Thanks so much for sharing your story! What was the reason for you to start treatment? Based on number only or also because of symptoms? And how long have you been on Pegasys before adding the hydroxy? It’s interesting that your hematologist suggested the two drugs together. I thought if Pegasys does not work they would propose to switch and not temporarily add an extra one. I’ll definitely keep this one in mind when I discuss what my options are next month with my hematologist. (Also not an MPN specialist… so I need to see what can be done there)
My pleasure. It’s really important to share as we are such rare beings! The reason treatment was started in my case was because my platelets were sharply rising so my Haematologist wanted to harness them before the got out of control. I’d just had a baby when diagnosed after high platelets being identified in pregnancy. My body was just recovering and over a few weeks of monitoring my platelets were getting higher & higher. I started on Pegasys and I think it was about a month before Hydroxy was added in because unfortunately my platelets were still rising. The effect of Hydroxy was speedy but I wasn’t keen on being on a chemotherapy drug long term as I was in my early 40’s at this stage. I also felt dreadful but this might have been because of an awful pregnancy, difficult birth, a baby who didn’t sleep well, anxiety over my health. Add in 180 Interferon & daily Hydroxy tablets - it was a lot. Luckily after a hesitant start Pegasys kicked in without Hydroxy and it’s not a huge bother to me these days. Try to be patient, I’m sure you’ll find the right treatment regime for you.
Thanks! Indeed taking a chemo at 40 is scary, but I’m glad to know now this can also be a temporary solution. For me pregnancy was when my platelets where the most in control, especially in the last trimester. Unfortunately, the went up even higher than before in the postpartum…. It must have been scary to have the high platelets discovered during your pregnancy.
It was and it wasn’t. I had a lot of unexplained issues during pregnancy that caused considerable head scratching by consultants so it was almost a relief that something wasn’t as it should be. The worst part for me was waiting for the genetic testing which took a month because it was over the Christmas period when I had a 3 month old baby and then like you, when treatment didn’t work quickly I was very panicked. I guess the hormones didn’t help. I went back to Haematology weekly for about a month before the adding of Hydroxy and the beginning of my platelet decline. It’s interesting that you say that your platelets were most under control in pregnancy because when I mentioned to medics I had been told there were issues with my platelets all without exception thought I meant I had low platelets as apparently this isn’t uncommon in pregnancy. My emotions around ET are definitely more in check these days but this is because for around 3 years everything has been stable but I know should one of my check ups highlight any issues I know I’d be in for some sleepless nights. Health is wealth as they say so I try to use ET to give me a sense of perspective and to live life well. I recently went to a forum, my second, and it was lovely to see so many people with MPN’s who are thriving.
If there’s anything I can ever help with please don’t hesitate to reach out x
I did some research on pregnancy and platelet count and apparently it is common to have low platelet due to the fact that the volume of blood increase. But in the case of ET, platelets typically decrease more than what you would expect just based on hemodilution although the mechanism is not fully understood. Anyway I am glad my pregancy went fine without major complication. The journey leading to it was tough though (infertility & miscarriage) and I am wondering how much of this was ET related.
Where was this forum you went to?
Mine too. IVF and also a miscarriage. Miscarriage is reported to be more common in women with ET.
I went to the MPN voice forum in Cardiff but I went to an MPN conference before the pandemic in London. Are you based in the U.k?
Sorry to hear your road to a baby was difficult too.
I live in the NL but an MPN conference could be a good excuse to come to the UK for a long weekend!
Hi I have been taking Hydroxy for nearly four months my platelets have come down from 1025 to 560, the reduction has slowed over the last two months and i have been wondering how long its going to take to get below 400 which seems to be the goal. I have ET Jak2.
Thanks for sharing! May I ask why hydroxy was the first intention drug for you?
I was told Hydroxy is the first choice here in the UK, but i suspect its more likely to be because its the cheapest!
Interesting, maybe it depends on other risk factors
I'm not a doctor, but I think you will find the platelet count will continue to slowly decline at over the next 9 months. MPN docs sometimes seem to have contradictory views; e.g. first they tell ET patients: "there's no need to take any drug until your platelet count reaches 1,500". But after starting a drug, they advise the patient to keep raising the dose until the count reaches 400, even if those high doses causes the patient to suffer.
Thanks, I was wondering the same actually. I am now under the 1500 bar but now with the drug the target is different
Like you, I am CALR+ but with MF, and had high platelet counts (1.2M) too initially. I take solely HU at this point. It does a terrific job with keeping the platelet levels under control and with splenomegaly. However, fatigue and pain are untouched. Pegasys makes some sense, because it can address the inflammation-caused symptoms. But I have read that, in addition to the long time, a higher dose is needed to be efficacious for CALR+ patients. It just doesn't work quite so well for us. If your symptoms have not been too bad, you may tolerate an increased dose.
Hi Aelle,
The response to pegasys therapy can be affected by co-mutations, ASXL co-mutation can slow the response in type 2 calr. Personally I would stick with it if you can.
The reason for your haems concern of platelet counts above 1,500 is that this is the threshold for increased risk of haemorrhage.
Good luck
Jawas
Thanks, I’ll look into these co-mutations, let me know if you have good references I could read! Did it take a long time for you to see Pegasys effects?
No problem.
I was a fast responder to interferon, thankfully.
Please prepare yourself, before looking into this, for information that may indicate a worse prognosis.
The specific link for co-mutations and interferon response is :-
acsjournals.onlinelibrary.w...
I had a quick play with the prognosis tool and for ASXL mutation it was about 4-5 years less life expectancy ON AVERAGE (I put the on average in bold because I believe the important thing for us as MPN patients is to live healthily and minimise inflammation to give an above average prognosis.)
The prognosis tool link is:-
sanger.ac.uk/science/tools/...
There is tons of stuff now available online about co-mutations if you feel like looking.
All the best
Jawas
I have the same as you and have been taking Pegasys for a year. I wanted to change from hydroxy but took both for a few months. I’m now taking peg only, 90 every two weeks, down from 90once a week. It has taken a year to kick in but I am hopeful it is now working well. I feel much better than I have for a while and would recommend persisting with peg for a year before deciding.
This is the first time I have posted here, although I have been following this site for a while on a weekly basis, your dilemma reminded me of my own worries from a year ago!
Thanks for sharing! Did your platelet go up when you stopped hydroxy? I think I would be fine trying the drug for longer, I’m just worried my non MPN specialist hematologist will conclude it’s not working too fast so trying to gather more experience 
My platelets did go up after I stopped the hydroxy but gradually came down again. Now around 500
nice that it worked like that!
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