Just joined MPN Voice, I was diagnosed with ET 2 years ago, recently had a more definitive diagnosis, CALRins5 (Type 2), other non driver mutations not known. Only taking Aspirin at the moment but may be starting Pegasys at the beginning of 2019. I have read that a high proportion of people come off Pegasys due to side affects, just wondered if anyone has had a more positive experience ? A new interferon should be approved by the end of the year (Ropeginterferon) which apparently has a much longer elimination half life, less frequent dosing (1 injection every 2 weeks during treatment phase and 1 per month in maintenance phase), and better safety & tolerability. Main indication PV, not sure if it will be available off label on the NHS for ET.
Experience with Pegasys: Just joined MPN Voice, I... - MPN Voice
I started Peg in March at 45mcg weekly, now 90 mcg. Had a good Haematological response and possible Molecular response, Allele Burden dropped from 75% to 66% but this is within margin of sampling error.
No side effects of any note. IMO many of the INF horror stories are result of too high a dose, especially if started at high dose. Need to acclimatise to increasing dosages. Also, in the past, INF has been used in very high dosages re hepatitis and this did cause major side effects.
Peg is more easily tolerated than regular INF.
I’m very pleased with it but some of us tolerate it better than others. Possible side effects are a concern but Peg appears to offer a chance of remission (for some users) so my advise would be see how you get on with it. But start low dose.
Hi Paul, thanks so much for your response and sharing your experience, I don't feel quite so daunted by the prospect now. I will definitely give it a try and bear in mind your advice about titrating up the dose. However, I'm hoping that Ropeg will be approved and available off label on the NHS by the time I have to start. The clinical trial results for Ropeg seem to indicate better safety & tolerability than other pegalyated INFs, probably due to the mono isoform and much longer elimination half life. Paul, can I ask if you had your allele burden testing on the NHS or privately ? I did ask my consultant if it was possible to get it done to establish a baseline in order to assess if the INF treatment was having a MR as well as a HR. Unfortunately, he said that allele burden testing was not available in the trust. I also asked if it would be possible to have a test to determine if I had any non driver sub mutations. I knew this was a long shot, so I wasn't too surprised that it also wasn't available. Which is a pity since a lack of MR to INF treatment seems to be linked to the presence of sub mutations. Also seems to have an impact of prognosis and OS.
Yes I had the AB test under private cover. Also had a 31 Panel Myeloid test which indicated that I have TET2 mutation (I think 15% of PV are also TET2)
This possibly means a reduced response to Peg but based on limited data. So far I appear to have had a good response.
One research note I read claims it’s the inflammatory effect of TET2 that ‘blocks’ the INF pathways. The same with smoking.
I have a very low CRP (<0.3) and wondering in this is a factor. My Hems were a little dismissive re my great theory that my anti inflammatory diet was enhancing Peg efficacy. Evidently there are multiple pathways. However my impression is that they simply don’t know, there is not yet any clinical evidence although there are several anti inflammatory diets in trials but not tied into INF.
My view is anti inflammatory diet very healthy so what have I got to lose, other than any decent pudding!
Re mutations, my understanding is there is a snowball effect. Having 2 was a factor in starting Peg.
Thanks Paul, I thought that your AB testing may have been performed privately. Its definitely worth having done and also the sub mutational analysis. I will look into the costs and the labs offering the testing, although these type of genetic tests are typically quite expensive. Good luck with the anti-inflammatory diet, as you say, it's worth trying but treat yourself to the occasional pudding !
All the best
I have been on 45 mcg of Pegasys Interferon for just over a year. I have had no side effects which is surprising in that I generally I do not tolerate new drugs well. My bloods are all now in the normal range. (I am ET JAK2+ diagnosed in 2016). My allele burden was tested on NHS before starting Peg and it was 20%, tested again after a year and it was 14%. I am very well looked after at the Churchill hospital in Oxford. I agree with Paul that many of the Interferon problems seem to happen on high doses. I have been really pleased with it and very glad I held out for it rather than being pressured into taking Hydroxy following diagnosis after a (luckily minor) stroke. Good luck with your treatment.
Hi Tessa, thank you for sharing your experience, that's really encouraging, very pleased to hear that you are doing well. I also came under a bit of pressure to start with Hydroxy when my platelet count reached 1M but after doing quite a bit of research I came to the conclusion that I would prefer to try INF as a first line. My initial consultant was very reluctant to consider the INF option and in addition it was not available at that particular NHS trust. Was referred to another consultant at a nearby trust who was much more sympathetic to the INF option and is prepared to prescribe it. Should start in the New Year and hoping I will have a good response with few side affects. Unfortunately, still haven't been able to get my CALR AB tested, now looking at getting it tested privately. I hope you continue to do well, take care. Huw.
I've been on Peg for just over a year. I inject 45mgs weekly. My counts have come down from 1250 to 170. I think I do get some side effects however I can't be 100 percent because it may be a side effect of of ET. I get tired and have muscle aches occasionally. My attitude is that the side effects are ok as long as they are not too bad. The important thing is that keeping my counts down is the main objective. I still cycle to work and live pretty much as I did before. I wanted to take Peg and not HU therefore I am fortunate to get what I wanted. I think it's important to be positive and not over think what's going on. My advice would be if you want to take Peg then go for it and don't worry. Be aware of how it effects you and if your counts come down and you can live with the side effects then all is good
Thanks Jocko, good to hear of another positive experience with INF and good advice. In your case with a reduction in platelets from 1250 to 170, that's amazing. I have been diagnosed for over 2 years but only joined MPN Voice 2 days ago. Just so good to be in touch with other patients with MPNs. Very grateful to all those on this site who have shared their experience. Hope all continues to go well for you. All the best, Huw.
Hi Huw, I have been on Pegasys for 3 years with excellent results - normal blood counts - and currently no side effects. I was diagnosed with PV with very high platelets and Peg has been life saving. I started at 90mcg weekly for 10 months, then reduced to 45mcg weekly, then every 2 weeks and currently inject only every 3 weeks. I had minor side effects only at 90mcg - e.g. sore mouth, temporary hair loss/thinning/frizziness - and no side effects at the lower dose of 45mcg. My NHS trust does not offer allele burden testing and I did not pursue it privately as it does not seem to have any prognostic significance. I lead a normal life, with full time work and teenage sons and mostly forget I have this disease. I hope it works as well for you as it has for me! Susana x
Hi Susana, three years on INF treatment with excellent results and minor side affects is incredibly encouraging. Sounds like you have been able to just get on with your life which is brilliant. Just hope I respond as well as you. I wanted AB testing so that i had a baseline before starting INF since in some patients INF can reduce the mutant allele burden significantly. However, in those patients that have a poor MR, this appears to be due to the presence of other sub mutations, which also can have prognostic relevance. That being said, I may just be over thinking the whole thing and should just go with the flow. If I get a good response to INF, tolerable side affects and a good quality of life, who could want more. Thanks again for sharing your experience, very encouraging. Huw x
Hi. I started Peg one month ago. My doc put me on a baby dose because he was worried about side effects as I am very sensitive to medication. I inject 45 mcg once a week. No real problems as of yet. My platelets dropped from 1,500,000 to 900,000 in the first week. I’m here in the US and they are having excellent results with Peg here. Good luck to you!!
Thank you Miriam for sharing your experience with Peg. Your fall in platelets in just one week is remarkable, I will definitely discuss a starting dose of 45mcg with my Haematolgist. A number of patients have commented that it is best to start on a low dose to avoid side affects. From the feedback I have had from this site, I am definitely feeling much more positive and less apprehensive to start Peg. Miriam, I hope you continue to do well and wish you all the very best. Huw.
I have been on Pegasys for 9 months. It has done wonders for my numbers. Platelets now normal and minimal side effects. I think its a good idea to get a baseline because on your allele burden since thats how molecular response is measured. I have the additional ASXL mutation and peg is still working for me. Start on 45 mcg per week, slow and steady is the key to success with Peg.
Best of luck. You will do fine.
Hi Huw, I have read that interferon can put early Myelofibrosis into remission. Can you say here or message me where in Wales you are and which hemo you see? My wife will be seeing her hemo on Tuesday, and as she is on Anagrelide with early Myelofibrosis diagnosis we would like to explore the possibility of her having interferon instead in the hope it brings about a cure. Thank you.
Hi, I have read many clinical trial research reports for studies investigating the use of INF for the treatment of MPNs. Including some that indicate INF may have an effect in MF for some patients, so i can certainly understand why you want to consider INF treatment. In Wales it does seems to be a bit of a postcode lottery as to whether your Trust will offer Peg INF. I must admit I did encounter some problems, hopefully resolved but still not 100%. I am very new to this site, not sure if it supports private messaging. But please feel free to send me a private message link or email details and I will be happy to share more with you. It's just a bit sensitive for a public forum site. All the best, Huw
Hi there and welcome!
I started Pegasys about 6 weeks ago, I’m on 45mcg a week. It is already doing a great job at bringing my platelets down. I transitioned over from Hydrea.
I was incredibly anxious about the side effects of interferon but also excited as I’d read how successful it had been in bringing platelets down for others and the fact that interferon is something our bodies naturally produce.
Each week has been a bit different for me. Nothing unmanageable though that would make me want to stop using interferon.
Last week I felt like I was coming down with the flu. I did my injection on Sunday night and the last few days I’ve felt really good! Maybe the interferon helped me overcome a virus.. I don’t know!
Start on a low dose and I’m sure you’ll be just fine. Wishing you all the best on your Peg journey! Take care
Hi ! And thank you for sharing your experience, very reassuring. I have been quite anxious at the prospect of starting with Peg but thanks to all the wonderful people on this site who responded to my post, I'm feel 100% inspired. I must admit, I do feel a bit guilty about my apprehension, since not everyone gets the chance to access Peg. I hope you continue to do well, take care. Huw.