I have now been on peg interferon for 4 months or so. First two weeks on 45 dose then 90 for two weeks and 180 every week since. Unfortunately nothing has changed apart from me being a bit more angry and a bit more down. My platelets are still hovering around 1500, last count was 1632 so up, I’m still needing a venesection every 6 weeks or so.
So my question is how long do I give it or should I accept that if it hasn’t worked by now it’s not going to? As I said the only side affect I may be having is slightly low feeling and short temper and itching. I don’t particularly enjoy these or the 2 x injections every week plus the huge cost to NHS. Has anyone else seen improvements start after such a long period?
I’m only 39 so am not sure what the next option is. I’m not keen on hudroxy as I’ve heard it increases chance of bone marrow scarring later in life. But is there anything else and if not what are the issues of living with platelets this high? Is it just thrombosis related issues or am I doing long term damage elsewhere?
My Haemotologist has not really used peg interferon before so is a bit in the dark like me as to if it will work ever. I’m considering getting referred to Guys as I suspect they may have come across more cases similar to mine.
Cheers all
Joe
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Sorry to hear your platelets are remaining stubborn. They’re quite high and so prob do need medication of some sort. I think you need a haematologist you can trust and who has experience with the drugs and what it best for you. If Guys is accessible for you then that’s a great place to go - referral time might take a few months. They will provide the best advice on how long to give peg a chance and may advise hydroxyurea - a lot of people take this with good results. But they will have a good grasp of everything and suggest what’s best for you. Hope it works out. Tim
I can understand yourfrustration. I started Pegasys last December at 90 mcg every second week. In my case it was the hematocrit which remained stubbornly high for months. My haematologist had to increase the dosage to 135 mcg first every second week and now weekly. In addition, I had a venesection every 2-3 weeks for a couple of months. Luckily I seem to tolerate Pegasys quite well though the double whammy of increased medication and frequent venesections did leave me feeling very tired. I had good news at my last visit in July, though. Hematocrit finally seems under control ( below 45) and platelets have gradually reduced to around 600 (from around 1000) As you can see it has taken me 7 months to get to this point. It has helped that I have absolute confidence in my haematologist who did warn me that interferon is a slow-acting drug and that I would have to be patient. No more venesections for the moment and I hope that when I next see him in September my blood counts are still on the downward track and that I’ll be able to ease off on the interferon.
I do believe Pegasys is the best option long term, especially given your age. By all means seek a second opinion - this is a worrisome disease and can feel like a rollercoaster at times - it’s vital to have a good haematologist experienced in MPNs that you can trust.
First, I'd agree with Tim that if you can be seen at Guys then do it. I am now being seen at UCH and happy with my treatment there. I was previously being seen at my local hospital. I'd been on Hydrocarbamide for over 30 years, from my early 30s, but it wasn't working well any more so I was switched to Anagralide. Had 24/7 headaches which didn't respond to tweaking my dose so that's why I transferred to a specialist MPN clinic. They tried Peg Interferon next. I didn't have any of the side effects you mention except skin problems which were driving me mad. Showers became a thing to dread. It did keep my counts just above the ideal though. I stayed on Peg Interferon for 6 months at 180 ml once a week. I now have myelofibrosis and once I hit 65 I became eligible for Ruxilitinib and what a relief! No more puritus. Having said that, I think it unlikely that Hydrocarbamide was the cause. I've had ET/PV (various diagnoses over the years) for over 45 years and was first given radioactive phosphorus therapy which is no longer used, I think, because of the poor prognosis long-term. I'm of the opinion that after all this time and as you get older, things deteriorate. I've read a lot on this list from people scared of Hydrocarbamide. Personally, it worked really well for me for a very long time. I would rather take it than Anagrelide or Peg Interferon any day, but I do have a friend on anagralide who has had no adverse reactions - everyone is different. I'm not an expert but I think the main risks from high platelets are a stroke or a thrombosis elsewhere in the body (I've had both, not recommended). Sounds like 4 months is long enough to expect the Interferon to work and your counts are too high for comfort so if you can get to London, a specialist clinic is the way to go. Hope that helps, Amanda
My experience is similar to the posts above. I am on Pegasys for about 10 years. For the first years I had irregular venesections when the HCT hit 42. So the effect of Pegasys didn't take immediate effect or control the red cells. I have PV. I even have had 6 months remission until HCT and PLT started to rise again. I think I remember during the initial period that the rise in platelets was due to the venesections.
After all this time I keep my HCT around 39 and PLTs around 180 on 45mg every 10 days. This is low but it suits me. If HCT gets to 40 it shoots to over my 42 cut off. Then I get headaches and have venesections which I try to avoid. Haven't had one for about 3 years, fingers crossed it will stay that way.
All of the time I have been on Peg I have bad itching after showers and react to every injection although that has eased a bit. But I am committed to PEG as the best option for me.
So the point of this is that interferon is slow to act, may act better at some times than others but for many MPNers it does work.
Hi. From what I understand Peg Interferon can take a while to work. But I suspect what’s at stake here is the extent to which you do or don’t have confidence in your haem team. Given your age you have a long journey in front of you. I think I’d want to be in the hands of someone who was very familiar with the drug options and had the expertise and experience to take a long view (particularly in a field where understanding and management of the disease is changing so fast). If you do have the option to get a referral to Guy’s - even a short term one - I’d take it. Good luck.
Thanks for all your replies. As always very helpful. I saw my consultant yesterday and as expected nothing had changed in my platelets etc. She consulted with a colleague and because I am sitting around the 1500 mark they would like to get my numbers down somehow so I’m going to try hydroxy for a while. Meanwhile she suggested before I could talking to Claire Harrison and was planning to write to her for advise. I said i was going to ask about that possibility and she was happy to refer me up to see them at guys for a second opinion. So for now I’ll start hydroxy next week to bring my numbers down and see if there are any other recommendations from Guys in due course.
I am sorry to read about the lack of response to Pegasys. I have been on Peg for almost 3 years with great success for PV but it took a year for counts to normalise on 90mcg week (I now inject only every 3 weeks). I did experience an immediate reduction in platelets but I was not having venessections which bring platelets up.
If I were you I would: a) seek a second opinion from an MPN expert; b) consider giving Pegasys more time; c) ask about combination therapy, eg Pegasys and Ruxolitinib (on the interferon Facebook site some people had good results this way for difficult to treat PV); d) maybe even ask about regular interferon, rather than pegylated (again on the Facebook interferon group a couple of people have reacted better to regular interferon).
All the best to you and hoping for an improvement soon, Susana x
Yea I was reading that last night. I think i made a mistake and it may slightly increase the risk of leukaemia instead but to be honest people are divided on opinion so I’ll try and see.
You poor thing. I’m ET and after 2 1/2 yrs still not stable but I’m hovering around 450. Bbiiiggg difference!!! Don’t consider getting a second opinion -do.
Birmingham have a good mpn specialist there. I listened to her give a talk at an MPN forum.
I was put on Pegasus all different doses for six months and my platelets did not budge and remained at 1.7 million. The MPN expert that I see in New York City advised that I stopped taking it and so now I have been on hydroxyurea and my platelets are down to 500s.
I am so sorry your platelets are being such a pain. My daughter, age 39, has ET (CALR). She started HU. Platelets went from 1.5 to 800. She did not like the side effects of HU. She was advised to switch to interferon due to long term use of HU and her side effects. Her platelets rose to 1.6. Interferon increased to 90 and added HU every other day. After a couple of weeks, platelets down to 1.1. Her dr advised that interferon might be take time to reduce platelets. I wish you the best. A second opinion could help.
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