Was diagnosed with ET about 10 years ago and platelet count averages around 700 and have been on low dose aspirin ever since. Other than general fatigue I have had no issues until I recently had a proximal DVT on a long haul flight.
My Hematology consultant has now recommend starting drug therapy to reduce my platelet count to lower the risk of further DVTs. I now have to chose between Interferon Alpha (recommended), Hydroxcarbamide, Anagrelide but have no idea which to chose.
My thoughts are to go with Interferon but have no real idea which to chose.
Anyone have any thoughts or experiences that might help?
Thanks
Ben
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Crofty7
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I hope this video presentation from the recent Ash Conference is helpful.
There appears to be increasing chance that long term Pegasys/Interferon can slow progression but no definitive results yet. Trouble is that there have been limited trials and current trials are only now beginning to deliver results that are clinically significant (ie long enough and properly supervised).
I’m on Pegasys, 90 mcg weekly, and very pleased with it. Important to start at low dose to minimise any side effects
Hi Ben - I take hydroxy (one tab one day, two the next) and clopidogrel. Like you I was just on aspirin until two small TIAs, and then put on the hydroxy to lower platelets and the clopidogrel as anti-platelet drug to go along with the blood thinning baby aspirin. My understanding is that hydroxy is usually the “first line” treatment as it’s generally well-tolerated. I’ve been taking it since July 2018 and have experienced no side effects at all. You’ll hear from others on this forum no doubt with good advice, and longer term than mine. You’ve come to the right place!
HI i too have had 3 blood clots to the Liver it occurred months after a trip to the states at first scan in November so did not get results till January i was offered same drug option i had heard bad reports and read reports about the interferon so i opted for the hydroxycarbamide yes you feel nausea to start but you can get an anti emetic to help i have never looked backand that has been years have been on it they can jiggle about with it dependent on white cell count or platelet count hope this helps best wishes ScottishTerrier
Hi. I chose Interferon as it seems better for someone my age (43 at diagnosis last year). HU (so Haem and literature says) through longer term use potentially brings increased chance of developing Leukaemia. No such evidence with Interferon. Flu symptoms went away quickly, and my platelets are down in normal range in just a few months (900+ to 330), all good.
I only had flu symptoms for a few weeks I think. I took the interferon at about 6pm, a couple of paracetamol before, and a couple before I went to bed. The first injection I had achey legs and back, but after that it was only really shivers...if I forgot to take paracetamol! Hope it works for you.
I’ve asked about the pegalated version, but probably won’t get it as it’s more expensive and i’m not intolerant to the standards stuff. I was on 4 injections per week, but now down to 3. Check up in a few weeks.
Are you still doing well on interferon? I'm a year into 1000mg daily of hydrea a s I feel terrible. I felt a million times better untreated but had a blood clot in my colon vessels so had to start tx. Thinking about changing. 43 years old. Dx 2013. Jak2+.
Yep, i actually changed to Peg Interferon about 12 /14 weeks ago I think (shortage of cheaper standard stuff). So higher dose but once a week. No side effects at all. I was Dx in June 2018 and was offered hydrea or interferon. I chose interferon because active lifestyle outdoors doesn’t really fit with hydrea (I was told). I’m 45 and also Jak2 +. Busy work life, not had any days off yet! I had a blood clot in portal vein (won’t go now), so only complications are from that really. Bloods in normal range but on warfarin for life.
That makes so much sense about the active lifestyle. I did 10 sprint triathlons with ET only taking aspirin but now a year into taking hydrea I cant even run! I cry about it. I'm so miserable! I go to doc in 2 weeks and am going to see if I can change to interferon. Thanks so much for update!
I would be tempted to opt for the interferon alpha, especially if you are a younger MPN patient. There appears to be encouraging results pointing (but not proven yet) to a deeper molecular response long term.
I wasn’t given a choice, just told you have ET and are ‘high risk’ because of your age, and you need to start treatment with hydrea. Having said that, I have had a good response to hydrea and no side effects. All the same, it would have been nice to have been given a choice.
Thanks Mary, def leaning towards Interferon now. Was glad to have a choice but also fairly confusing so glad to have this forum to disccuss. Thanks Ben
I was on interferon initially in the hospital, but it was harsh. I was on daily injections though. I am on Hydroxycarbamide now. Low dose of 1mg week days and 500g at weekends. The Hydro is oral and I have no issues with it whatsoever, however you need to sperm bank if you are thinking of having children.
Thanks Tomaj, I think I'll be on weekly injections but not too sure. Youngest is about to turn 18 and no plans for any more so all good on that front, but good to know for others. Thanks
I was on Anagrelide initially at 50 years of age, now on Inteferon at 62 due to not being able to tolerate the palpitations from Anagrelide any longer, my consultant just last visit told me that if I presented now he would have started me off on Interferon from the start at 50.
I take 90mg weekly, my count is falling gradually now 300, was 2000 on diagnosis, if it continues to fall my dose will be decreased again. Good luck whatever you decide. Not taken Hyroxy as I refused it at diagnosis due to only being 50 and potential longer term side affects as mentioned before. Side affects of Interferon for me are much more tolerable than Anagrelide although Anagrelide reduced my platelets for about 9 years.
Hi Ben, Im in the exact same situation too. Was diagnosed 10 years ago and now Doc thinks I should start Peg. There are some DR on youtube who discuss this.
Took my 1st dose of Interferon Alfa (Roferon-A) 3miu on Friday and flu symptoms started around 3hrs later, and endured a sleepless night. Didn't have any paracetamol in the house so had taken lemsip max instead!
Spent the rest of the weekend feeling very tried with a slight headache.
Fingers crossed for Mondays inject, when I will ensure to take paracetamol before and after
I've had 26 clots and 7 vascular ops needless to say I've only just fount out I've got ET after years of testing. I'm on the chemo tablet daily and blood thinners besides sickness I've been ok on it but only started on it a week ago
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