I’ve now run out of doses of Interferon. I have been injecting 90ml fortnightly and my numbers have been stable for a year or so. My consultant has scheduled a meeting with me in a couple of days, two days before I would be due for my next injection, to discuss the national shortage of pegylated Intervention alpha. His PA suggested that he might be planning on me taking a medication ‘holiday’.
To me, this sounds like rationing. I appreciate that medication supplies are critical and that there will be many patients out there with greater need than me, but I wonder if this is the best option for me.
Any support or other options welcomed. I have read ET Guy’s two most recent posts, both of which are really helpful, so I’m wondering if I might open up the conversation with my consultant.
Thanks,
Josh
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Given the situation with Pegasys, it would be logical to seek alternatives. Besremi is a most suitable for many. One of the other interferons could also be considered. Jakavi would be a logical alternative for anyone with PV or possibly ET for off-label use. A short stay on hydroxycarbamide would be another choice for some.
I believe that Besremi and Jakavi are both technically available in the UK but difficult to access due to the expense. Others in the UK can better address that question. I believe that the good folks at MPN Voice are working to ensure that people can access the meds they need.
Medication holidays are usually used when someone is having trouble tolerating a medication. Sometimes temporarily stopping a medication then rechallenging with a second course will work for a patient.
Weighing the risks/benefits of stopping the Pegasys temporarily vs shifting to another cytoreductive medication is something that will need to be decided on a case by case basis. You will need to review each of your options with your MPN care team.
Hi Josh, I am in a similar situation. With my next consultation upcoming shortly and given the shortage of Pegasys, I suspect I will need to consider the alternatives. As you mentioned, MPN Voice et al. have petitioned the respective UK NHS regions to consider temporary approval to prescribe Besremi. However, given the cost, I am not very hopeful that this will be realised but fingers crossed. To address your question of INF Holidays directly, I came across this study which examines such a scenario:
Interferon-Alpha (IFN) Therapy Discontinuation Is Feasible in Myeloproliferative Neoplasm (MPN) Patients with Complete Hematological Remission
Conclusion: Overall, our study demonstrates that IFN discontinuation represents a safe strategy in MPN patients who achieved CHR, and particularly in patients with a driver VAF lower than 10% at time of discontinuation. Importantly, relapsed patients did not develop IFN resistance. Our data contributes to set the frame for future clinical trials evaluating the possibility of IFN treatment holidays in good responding MPN patients.
I have been on Pegasys for about 5 years achieving CHR, however my CALR mutation frequency has never been established. Hence I do not know if I would fit the <10% driver VAF criteria. Even so, it may be a reasonable option, particularly since relapsed patients did not develop INF resistance. This leaves the option open to recommence INF treatment when Pegasys becomes available again, which is expected in about a year.
I have one data point, I was at ~7-8% VAF Jak2 upon quitting IFN. Starting VAF was 14%. My counts held for ~ 3 months, but then PLT started to rise so it needed fixing at that point.
Some reports have 2% as a viable cessation point, but as always, "it varies".
If I have it right, RM 16 thousand (16,000) = ~4 thousand USD. Is that for one month supply?
For USA it works out to ~$16,000 per month. (60 pills) If above is right it's ~1/4 the price in Malaysia. Either way most pts need some sort of financial assistance.
It's a both a political and economic issue here. There are no price controls on most drugs here. The drug cos rely on huge profits here to cover the cost of trials, low prices elsewhere, and duds. Most drugs are duds. (the dud ratio is getting better recently with better tech) And we see here Canada for example is tight on these high cost drugs while US has decent access (and taxes to pay for it). The going rate for cancer drugs and the like in USA is similar for most, $200k+. (Besermi is the same) One time treatments like Cell therapies can approach 1 million. If the new Sjogren's drugs get approved I could be a half $million/year pt, am I worth it? good question.
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What helps is competition; we saw in the new Hep C cures the price went down a lot once there were other similar drugs. Sjo drugs are lined up like ants in late trials, so there should be plenty of competition there at some point. Unfortunately Rux market is not large enough to push that. The Rux patent expires in 2028, so it should get a lot cheaper. But by then if all goes well, Incyte will have a much better drug that is now in trials, probably at $300k+ by then.
I understand all this some as an inventor. The years of early high risk work is "free" (no sales/royalties) and the payoff comes in the rare case the product succeeds. Expiring patents give incentive to invent more. But drugs get special treatment from the patent office. I do just mechanical gadgets and don't need to do expensive trials, a tiny corner of the innovation world.
In the UK the user does not see the price. Besremi has been ruled out in England on a value for money calculation Jafaki has been approved as the secondary. It is more expensive than Peggy but I don't know how much
Same here, prices are not easily found. If prices track the US, Rux is the same price as Bes while PEG is much cheaper. Could be that Bes has (had) a cheaper substitute (PEG) so NHS nixed it while Rux has no equivalent. Now the only cheaper IFN-a is Roferon.
I had a consultation a few weeks ago and my dose of Pegasys was altered from 90 mcg every 4 weeks to 135 every six weeks so it might be that your consultant could arrange something like that? it's worth discussing. I was given three syringes so I'm ok at the moment but going forward I was told I might be given only one at a time.
Each of us is different, so your consultant may have a reason for suggesting a break from Pegasys but, as others have suggested, a change of frequency may be preferable, so long as some Pegasys is still available in your area.
In my case I’ve gone from 45mcg every four weeks to 90mcg every eight weeks, to eke out the few syringes I have left…
Besremi is still not approved as a short term solution in the UK but we still hope that may change as the Pegasys shortage gets worse, despite the much higher cost.
My consultant has suggested that I go from two weekly injections of 45mg to three weekly. As I understand it, he is taking my heart history into account (myocardial infarction). Blood test and review in nine weeks. A relief.
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