I’ve been diagnosed with PV 6 years ago and am 57.
I live in Uk and have been managing blood levels with a baby aspirin and venesections. Last year my white blood has started consistently rising.
My haematologist has suggested I go onto 45 mic Pegasus starting in October. She’s asked me to think about it. She has said only Pegasus is available- is this uk wide ? Or just our hospital ?
I’m wondering has any one in uk gone straight onto Besremi? I’ve read here that it’s proving to halt progression of PV and reduce symptoms and is more tolerable ie has less symptoms itself vs Peg.
My symptom symptoms are worsening especially fatigue. My burden has always been high ie flushes, tingly fingers, itchy skin, fatigue. Hard to tell if it’s age, definitely post nenopause.
I’m really hoping to get relief from symptoms too.
I’m worried about starting Pegasus due to the symptoms- they sound worse than currently with PV.
I eat an anti inflammatory diet limit alcohol and drink lots of water, exercise etc
Thanks for reading and any guidance would be great.
sanga
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Sanga
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The maker of Besremi would like everyone to agree theirs is best. But in fact we see here that members have good results with either. There are some who in fact do tolerate Bes better, but the reverse is also true for a few.
Both IFNs are the pegylated type, these are much better tolerated than the early non-peg types, so you can feel comfortable you're getting modern therapy with either. One advantage of Bes is official support for less frequent dosing, but even there some members are dosing PEG at two or more weeks after time.
Regarding progression, there is no evidence that either one is better. There are studies on both that have been discussed in posts here and as yet no certain answers for either. One advantage of Bes is its phase 3 study (the final stage) was specifically for PV so it has legal approval in many places for PV. PEG is not officially approved anywhere for MPN, it is used "off label". But in my opinion this distinction is somewhat bureaucratic, PEG has a 20 year history of use in MPN.
Both IFNs do have a list of side effects we can read about and see right here on the forum. Fatigue is common, but much related to MPN gets around to this in some way. There may be a trend that PEG leaves more disruption at the injection site from posts here. A top thing to watch in starting either IFN is liver counts and the like.
I went from HU to Besremi. I prefer overall the side effects on Bes, but esp as the dose rises it can be bad. But I suffer from a symptom burden from the start.
At 45mcg, your Dr's proposed dose would be relatively low, so you can check for your tolerance relatively safely. Your water habit is likely helpful, esp as you start IFN. I and others here find it to be so.
I believe Besremi is approved in the UK, but may still require an individual funding request. This may vary in different parts of the NHS. perhaps our friends at MPN Voice can do a better job explaining access.
I started on Pegasys before Besremi was approved in the USA. I switched when Besremi became available. My own experience is that there was no difference between Pegasys and Besremi in terms of efficacy and tolerance. The minor side effects I have experienced are the same. Both do a very good job controlling the erythrocytosis and thrombocytosis. The IFNs were much easier to tolerate than the chronic iron deficiency caused by the venesections. My quality of life has improved on the IFNs.
We are all different in how we respond to these medications. i would not hesitate to try either one. If you prefer Besremi, look into the approval process. However, Pegasys is a viable option. Given the symptom burden you describe, it is worth trying one of the interferons.
I am also MPN PV but venesection was never suggested as my WBC and platelets were also beyond normal at the time of dignosis. I was straight put on hydra and it worked for me .
I am in the UK and about to start on Pegasys (later today!) .
As Hunter already explained, Besremi has been approved in the UK but is still undergoing reimbursement review by NICE and is not yet available on the NHS. I imagine once it becomes available, a switch will be possible if necessary. It is however encouraging to read that members of this forum do not notice such a marked difference between the two products, with a very individual experience as to side effects.
Like you, I started medication as my wbc's were consistently on the rise, but initially took hydroxycarbamide (HU) which has been doing a good job (whites went down) with very marginal side effects. I have been on a low dose (500 mg) for a year and a half, but the impact on the blood counts is now lessening and I would have to increase the dose if I decided to stay on HU only, with the likelihood is that side effects would start increasing.
I hope Pegasys will be kind to me and not be in a conundrum between the two drugs.
From all I read on forums, we really do respond very individually and there is no other way to find out than to try ourselves.
I’ve been taking Peg 45mcg/weekly for well over a year now and the only side effect I’ve had is fatigue. Obviously everyone is different and doesn’t react the same. My blood levels have all been in the normal range for well over half that time. Started on the low dose and it hasn’t changed. Hope all goes well when you’ve made your decision.
it’s the fatigue currently that is my hardest symptom, I’m able to tolerate the rest. When I hit a wall of fatigue it’s so debilitating I just have to lie on my back on the floor for 10 mins. I’m fearful if you get fatigue on interferon it’ll be worse than currently
Have been on Pegasys for nearly a year and a half and it works very well for me. Some cannot tolerate it but the best way is to try. Has been known to help go into remission which is very hopeful. Hardly any side effects and injection easy. Drink loads of water if you take it as I personally feel like I have a slight hangover the next morning if I don’t. Let us know how you get on and we are all here to help if you have any questions
Hi Sanga, I have ET not PV but started on Interferon in February(Once every 3 weeks) . The first injection resulted in flu like symptoms with shivering and aching all over. So off to bed with a couple of friendly paracetomol!
Next morning, apart from a headache which soon went, I was absolutely fine, no side effects.
Pegasys worked too well and I have had to take a six week break because although the platelets came down beautifully, so did my haemoglobin count.
So now it's once a month on 90mg. Strangely my consultant said that 90 was the lowest dose and there you are being offered 45!
All I would say is try it and give it a couple of months or so to settle, if it's not for you, there are other potions to be tried.
I think you may have the longest dose interval of those on the forum for PEG. It's great how well it's working for you. There are many members at 45mcg, but at 90/month your dose is less than many who are at 45 in shorter intervals.
It is correct that 90mcg is the smallest prefilled syringe size. It is not correct that it is the smallest recommended dose. The standard starting dose for a MPN is 45mcg/week. The procedure is to waste the portion of the prefilled syringe that is not used.
If you can get by on a 90mcg/month dose and tolerate it then that is great. Do know that if there are issues with tolerating that dosing pattern, you can certainly do more frequent smaller doses. That is actually the norm for MPNs.
My haem wants to start low ie 45 to see tolerance and impact on bloods as wbc and haemoglobin are rising but not drastically high and platelets just going up and down. I think I prefer low dose and building to get used to drug.
That sounds like a good plan. 45mcg/week is the standard starting dose for PEG. Some people do fine on this dose and do not need to increase. this dose did control my platelet levels quite well after 8 weeks. Note that Pegasys can take longer to achieve goal for some people.
I actually preferred the vials and prepping my own syringe. That, however, is a personal preference. Either dosing device works just fine.
Hi Sanga. I have been on Pegasys for a year now, and I have no side effects and and excellent haematological response. 45mcg per week is what I started on and now I'm down to 45mcg every two weeks. I was very worried about side effects too, before I started, and of course everyone is different - but I didn't have any at that dose. Just to show that not everyone gets the side effects!
Interesting. Ive had PV for 14 years and on Aspirin and venesections. Only know my red cell count, haemoglobin and Ferritin levels. No idea about other blood cell counts. I'm 66 and other medication has never been mentioned, other than at my first appointment, when consultant said i may need medication at a later date. Must admit I've never asked for it.
that’s interesting. I’ve got a new haematologist and she wants to bring white blood down and I’m having too many venesections she feels .. and symptom burden increasing.
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