Hello all. Looking for help and info from the fountain of knowledge that people on this site have!! With the Peg shortage it’s certain my medication is going to change. I have an appt with my Haem team next week to discuss, but I want to go to the appt already having an understanding of the key info of the main treatment alternatives. I know there will be looooots of people in the same boat, so I hope this thread is helpful for others too.
My background - I’m in the UK, 29yo F, have ET (calr mutation). I’ve been on Pegasys for about 2 years, platelet count has been stable in the normal range since I started Peg. No major complications, just get the non-specific/random symptoms related to MPNs in general, but largely I’m ok. I’m also looking to try and start a family soon, so I really really don’t want to take anything that could jeopardise this.
I’ve tried Googling but it’s rather overwhelming and makes me feel a bit lost! As far as I know, Besremi seems like a sensible alternative given the childbearing aspect of things, but I know funding for it in the UK is not a given!!! I also know the Peg shortage isn’t predicted to last forever, but it could be around 1year and so any change to medication is a big deal and is relatively long-term!
I have no idea what my team are going to suggest for me, and I’m not looking for specific me-related advice on this thread, more just general info about the drugs ahead of my appt, which I hope is helpful for others too!
Please could anyone provide some key info about the following medication (eg main risks, contraindications, their experience of it, how it’s tolerated etc…) or point me in the direction of some good resources?
Besremi
Anagrelide
Hydroxycarbamide
Any others that might be options?
Thank you very much, sending love to all who are in the same situation, it’s an unsettling time!
Char
Written by
cgcheets
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You have the list of options correct. While readily available, hydroxycarbamide is contraindicated for someone your age planning to have children. A female using hydroxycarbamide is usually advised to discontinue it 6 months before pregnancy. Anagrelide is also contraindicated during pregnancy. Besremi and Jakafi are both in clinical trials for ET, but not readily available. Bomedemstat is also in clinical trial.
The underlying question would be whether you need to use cytoreduction. At age 29 ET with CALR, you would be considered low risk unless you have a history of thrombosis, very high platelet levels/increased bleeding risk, or co-occurring medical conditions. Most people who are low risk ET CALR do not use cytoreductive treatment. This would be an option to discuss with a MPN Specialist. Note that it is particularly important to consult with a MPN Specialist rather than a regular hematologist during pregnancy.
Hello, thank you so much for taking the time to reply, really helpful info. It’s as I thought re hydroxy/anagrelide and pregnancy. I didn’t know about the ruxolitinib though so will have a look into this!
I hear what you’re saying re cytoreduction, but we decided I do need it. After I got diagnosed I had no treatment for about a year, my platelets were >1000 and I had a lot of debilitating symptoms. And any time my interferon dose has been reduced even slightly I struggle! So yep think I need the meds 🤣
Yep, you need the meds indeed! Your situation illuminates why the interferons are such an important option for many with MPNs. It is quite negligent that poor planning on the manufacturer's part has created a crisis for the MPN community. It is shameful that the transfer in Pegasys ownership has been so poorly managed. Hopefully, healthcare systems will find alternative forms of interferon to use or loosen the restrictions on Jakafi during this Pegasys supply shortage.
The only alternative right now is Roferon. IntronA is out of production, shame as they had a Peg version. We can help our medical teams "rediscover" Roferon. As I've posted here and prior, it should be a viable option if other viable options are closed.
If you find HU and ANA are not options, as Hunter notes, and Bes and Rux are not available, there is a possible alternative till PEG interferon is available again, the old fashioned interferon (Roferon). It's less convenient then PEG but does have a long history with MPNs. Its proven benefit is why we now use PEG and Bes as modernized versions of it. If your Drs are not young and have Rx IFN before they likely are already familiar.
I thought Roferon is discontinued? Because I was on Roferon and only got Pegasys because Roferon was discontinued. Also, Roferon was too produced by Roche, and Roche sold interferon production to &pharma, the company that produces Pegasys.
We're learning there are multiple members that were using non-pegged IFN, good indication it would have been a viable alternative.
I've looked deeper, there are many sites that suggest Rofer is still for sale including the reference here from monarch5000. Some sites in contrast say discon in 2007. But I think you're correct that non-peg IFN of any type is gone. This is the best summary:
2019 "However, Roferon-A, which is no longer available in the US, has been replaced by peg- IFN-α-2a (Pegasys)"
Thank you for bring up this subject . You have voiced my concerns and worries too . I have ET , Jak2 and have been on Pegasys for 2 years which was a huge decision to make in first place but I’ve been fine on it . Now this shortage has knocked me sideways. I’ve got haem appointment in 3 weeks . As you say good to be armed with information before hand . Good luck with your Appointment & keep us posted on how it goes for you .
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Conversion chart from Peg to Besremi?
Besremi side-effects, reverting to Peg
Peg interferon
Peg reduction
Pegasys interferon shortage
