Hi all
I’ve been on Pegasys since December with very limited results so far , my consultant has been patient with me and increased the dose so now on maximum 180 weekly to see if it does the trick but platelets still high at 970 . Has anyone else experienced pegasys not working for them . Apparently hydroxy is the next option and I’m not keen , again put off by side effects and sun exposure issues 😩)
My condition is ET Jak2?
Pegasys works well for me, but I was on Hydroxycarbamide for many years with minimal side effects. I never had an issue with sun exposure, I just took normal precautions against burning. The only other side effect was a tendency to mouth ulcers if the dose was high, but if I avoided acidic foods, that was no problem.
My husband is on 180 weekly, started on a lower dose end of Dec and it’s only just started to bring the platelets down. Think platelets are currently similar to your numbers.
I think hydroxy might be faster acting but they couldn’t find the right dose balance for him and he ended up with super low counts for everything but platelets.
We’re just sticking with it and hoping for the best!
Thank you for replying, I would like to stick with it for a little while , wondering how long has he been on the 180 dose ? I
About a month, and he has another 8 weeks on this dose before they look at increasing it.
Hi. I started in January with Platelets 1000+ (have PV). Started on small dose 45 increasing monthly to now on 180 ( been having monthly blood tests). Finally this month there has been a reduction, so it has taken a while to kick in.
Greetings from Fleetwood England.
I am ET. My count was initially 1500.
I take 2 hdroxi per day. Diagnosed 3years ago.
No side effects. My counts are now normal range.
Have been for 2 years.
I have Diabetic type 2.
My migraine have stoped.
Skin rashes calmed down, and I am fitter now.
I am 67 female.
I have a great team.
Don't be put off by the fact that hydroxy is what it is.
They Willoughby you out.
Take care , keep safe. Regards Annemarie.
Hi I've been on Pegasys a year now 90mcg fortnightly and my platelets have just now come into the normal range. Pegasys is a slow acting drug so be patient. I think it's wonderful!
It can take as much as a year for your body to fully react to pegasys. How are your side effects with the high dose age of interferon?
Hi Suebon,
I was diagnosed with ET CAL-R mutation in January 2019. At the highest my platelets were almost 1200. I was initially prescribed Pegasys but unfortunately at the time my platelets continued to rise. I was then prescribed Hydroxy to be used in conjunction with Pegasys. My platelets reduced fairly quickly to the 600’s. Throughout last year I continued to take both meds until I found myself feeling quite physically and mentally unwell. It was a gradual thing and didn’t really notice until I felt unable to cope. I should mention that I also have a toddler who didn’t sleep at all well and was busy during the day - very little respite.
Anyway, I saw a Haematologist in December and my platelets has dropped to 550 which for me is good but due to my quality of life we decided to come off Hydroxy and see what happened on Pegasys alone. The great news is that my platelets have continued to drop and in my consultation last week they were 261!!! I have been reduced from 120 to 90 a week to see how I get on.
Pegasys is a slow acting and everyone reacts differently. I have a very experienced Haematologist and he is surprised by my reaction, he expects Pegasys to kick in quicker but we are all different. Maybe like me you’ll need Hydroxy to kick start the decline.
There are lots of people on this site who have who take Hydroxy and have no ill effect.
So for me Pegasys took around a year to kick in properly. I’m so pleased and relieved. I hope your story will be similar.
Sending you my best wishes,
Joanne x
Hi. I was on for about 6 months with very high platelets (1800) and it never touched them. I may have stopped to quickly but apparently it doesn’t work for a fair few people. My levels were high enough to go onto hydroxy which, I too, was reluctant but it worked and side effects are not really affecting me in any way. It’s Much much easier to take, store and travel with as well which is good for me as I travel a lot for work.
I was on 17 Hydroxy a week, aspirin daily and more or less monthly venesection, about 30 months ago I was given Pegasys, 90 to start off with and then up to 135 weekly... Its taken over two years for Pegasys to make a difference. I was getting frustrated, so hang on in there...
I am now down to 5 Hydroxy a week, no venesection in over 5 months.. My consultant has set me a target for hct of 0.450, if I am slightly over then its a venesection. Some months ago my result was 0.451 and he insisted on a venesection...
So hang on in there, Pegasys may be slow, but its working for me at the moment...
Stay safe
In the uk hu is usually the first line of treatment I can assure you that the side affects are way out numbered by the positives I’m on 17 plus another drug a week. Go for it xxxxx
I started Pegasys in May last year and went up to 220mg (1 week only as the side effects were bad) back down to 180mg weekly and didn’t see impact on platelets until late Aug - post the 220 dose, it seemed to kick it into gear! It then worked a little to well with all counts dropping so stopped altogether for Dec and am now on 65mg weekly with platelets stable at about 250 and all other counts doing well.
I would say give it time. Once it works it’s good and once you get the right balance dose I have found the side effects to be minimal. I think some people are lucky that it works quickly but for me it took 4months to start seeing benefit and 8-9 months to find a balance.
Good luck.
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