I’ve really enjoyed reading the informative posts of others with PV ( haven’t been on the site for a while). I have to say that I’m amazed at how treatments such as Besremi and Pegysus are spoken about as being available quite normally.
Are these used in the U.K.? I had the impression that Hydroxycarbamide is the answer and that abdominal symptoms are to be expected and lived with by eating “little and often”. (Doesn’t really help).
I feel that I need to catch up a bit!
Hi, I too have PV and I've been taking Hydroxycarbamide for 4years. I've been reading with interest the other treatments available to us, but the possible side effects are so worrying, especially those listed for Besremi😬 The Hydroxycarbamide is keeping my bloods pretty normal, other than low ferritin but I do have symptoms that I feel are related to the medication. I'm just not confident that changing to something else won't come with its own issues
There are certainly other people in the UK using Pegasys and Besremi to treat PV and other MPNs. Both of these drugs are much more expensive, so the formularies used by healthcare systems often prefer the far cheaper hydroxycarbamide. This is particularly true for people over age 60 in some systems. The long-term risks associated with HU as well as the contraindications for the use of HU in people of child-bearing years also drives this decision in some systems.
It is unfortunate that all PV patients are not automatically offered a choice between HU and the interferons (and Jakavi) by all providers in all systems. The most ethical way to practice medicine to to present all of the viable treatment options to the patient, reviewing the risks/benefits of each choice. It is properly up to the patient to make this decision based on the patient's treatment goals, risk tolerance, and treatment preferences.
There are legitimate reasons for each of us with PV to choose hydroxycarbamide, Pegasys/Besremi, Jakavi, venesection-only, and other treatment options. it is both our right and our responsibility to make this decision. Assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates in any healthcare system.
I would encourage you to review all of your treatment options with your care team. Hopefully this includes a MPN Specialist rather than just a regular hematologist. It is ultimately your choice which medication you wish to use to treat PV.
All the best.
Thank you. Lots to think about.
There seem to be so many variants for PV treatments and many people seem to be fine with hydroxy but if you’re not able to live a near-normal life then you need to explore alternatives. I started on hydroxy but fared poorly with lots of fatigue, terrible mouth ulcers etc, then switched to interferon, also terrible as I lost loads of weight and felt unwell the whole time; before finally settling on Ruxolitinib which has changed my life! Bloods under control, fatigue reduced, weight fine, feeling more normal again. But everyone is different. The key thing is to ask for an alternative if you’re not feeling great.
What a great example of working to find the right treatment approach! You are an inspiration for persevering until you find the right solution for your MPN treatment. Thank you for sharing your experience. We truly are stronger together.
You're right HU can work well for many years for many patients. Besremi and Peg are interferons (INF). INF has been used for MPN for decades at Cornell (Richard T. Silver Group) But early INF was not well tolerated. With PEG at became easier to use, and with Besremi it's now US FDA approved just months ago for MPNs. This FDA approval is easing INF into more regular practice. The report discussed here has also received attention in the profession, it summarizes the Silver Group's decades of good result with INF.
healthunlocked.com/mpnvoice...
Both INF and HU have FDA black box warnings for possible severe adverse effects. But we use them because these worst effects are rare and the drugs are proven useful.
I have done very well on HU with good blood counts and fairly ok side effects. But I am switching to Besremi for its potential to improve outcomes and even reverse the disease for some. I also hope for more wellness.
The plot here shows results from the CONTINUATION PV study that was part of Besremi's FDA approval. It shows on average that patients can reduce their mutations on INF while HU has no such long term benefit. There is still debate how and when this reduction is useful, and FDA did not look at this benefit in its approval of Bes. But I'd rather try to reduce it now and find out later how useful doing that was- data point to it being very much so for at least some.
I’m in the uk I’m on Peg. I really think it depends on your symptoms and how you react to Hydroxicarbomide. ( I’ve got ET)
You need to ask for pegysus. I am a great fan of it and it is the only treatment I have received. They offered me hydroxy first but I said no and that I wanted to try peg. No problem! It is so much more expensive than hydroxy that I believe they have to offer the cheapest option first here on the NHS. The hope that peg can very occasionally put one in recession keeps me very positive as an extra bonus. You could always try peg and if it doesn’t work for you go back to the hydroxy or try besremi if you can get it on the NHS. For some of us we tolerate peg well but it doesn’t suit all. Start on a low dose of 45mcg to let the body get used to it. It can be slow acting but for some it works quickly. Drink loads of water. You can take peg and hydroxy together, especially as you are crossing over medications. Good luck and please let us know how you get on
With the interferon based treatments one of the major side effects was low blood counts, which is exactly why it was being used off label to treat us all. Besremi was actually made to treat
PV and ET Please keep that in mind when reading the list of possible complications of these drugs because this is exactly what we want.
Love the discussions ❤️
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