Following my PV diagnosis in May with haematocrit over 70% and haemoglobin over 200 my treatment with venesection 2 pints a week for the first 5 weeks then periodically, none for 8 weeks, along with daily dose of 500mg hydroxycarbamide and aspirin 75mg my bloods returned to normal ranges 4 weeks ago.
Last blood test this week haematocrit back up to49%.
I have chosen venesection rather than increase hydroxycarbamide which was advised.
I asked option of going onto interferon having read the posts here over the last few months but was advised by the consultant that there are more adverse side affects interferon?
Is she correct?
I am not anti hydroxycarmamide it has done its job just the posts here suggest it is not the best option,
Thanks Brian
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Swim360
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Hi Swim360, Interferon is a mere protein. I’m on weekly interferon injections for about 3 years at a fairly high dosage. I didn’t notice any side effect so far.
We each react differently to these medications. I was not able to tolerate hydroxy, experiencing toxicity even at very low doses. I tried venesection-only for a while, but the iron deficiency side effects were worse than the PV symptoms, That is why I opted to start on Pegasys (switched to Besremi when it was available).
The interferons have been much more effective and much easier to tolerate. Side effects have been minimal, nowhere near as bad as hydroxy. In addition, the research on Besremi indicates the possibility of improved progression-free survival.
On the whole. Pegasys/Besremi have been a much better choice for me. My only regret is that I waited as long as I did to start on the interferons.
Your Dr is most likely influenced by the earlier interferons (IFN). These were non-pegylated and required dosing daily or at least several per week. They were harsh and many could not stay on therapy for long.
Also, even with pegylated IFN, it was originally used for hepatitis C and doses were much higher than usually used for MPN.
These days we use modern Peg-IFN usually in more modest doses and we take it only weekly or even monthly. It stays in the body longer like a time-release pill so it's more mild on our system.
Long term venesection also has risks, as it can put the iron out of balance if it is frequent. Hunter is very knowledgeable here.
If your Dr says "more adverse effects" I would say that is not correct, each therapy has risks and adverse effects, and those of modern IFN don't stand out overall. In contrast IFN has potential benefits, you've likely seen here, that the other therapies you've tried are not associated with such benefits.
This post shows the idea of how modern IFN is better. It's for Besremi, but much the same applies to PEG:
Have you been tested for allele burden? This is how many of your cells carry the mutation. Esp if you do start IFN, you want to know this result at the start since IFN can reduce it.
Thank you EPguy, I can't over emphasise how important this information is to me.My Consultant simply said too many side affects.
I will use all of the responses I have received to send a letter to her and ask for a more informative response.
Hunter, in previous correspondence, stated how important it was to ensure the treatment was the right treatment and be prepared and informed for consultations.
Stated off on venesection, aspiring and Hydroxy. Eventually they decided to switch me onto a combination of hydroxy and Pega, it took about 3 years to get any real change. Eventually my number were good enough to stop Hydroxy and venesection.
They have now reduced my Paga from 135 to 90, my allele burden is now below 2%
Have been on Pegasys for well over a year and hardly any side effects, yet some cannot tolerate it. If you choose to try pegysus, bearing in mind you can always switch back, don’t let them put you off. Be insistent. Good luck
It may be that you would get Hct control yet with your present regime, it may be your iron levels are still quite high and hence Hct rising, tweaking the venisections may do it.Re interferon having more sides than HU, to date I would say he/she is prob correct overall. However as it appears that for some Peg or Bes may bring about molecular change after a number of years why not give it a try, some get no sides at all.
If your Haem doesn’t have much experience of Peg/Bes it’s important to start low and go slow to avoid poss sides. For some Peg/Bes can take months or up to 2 years to control counts so you may need to be patient. HU of course works quicker but also like all drugs have it’s drawbacks and doesn’t have progression modification potential of Peg for some.
Hi swim360, I can't comment on Interferon but I was diagnosed PV in Feb 2020. I had to initially have what was described as "aggressive" venesections of 500ml weekly and for a couple of weeks 2xweekly. I was then put on Hydroxy, 500mg daily initially (plus aspirin). It took a while of monitoring with fairly frequent blood tests and they adjusted the Hydroxy dose over some months and am now on 5x1gm and 2x500mg weekly. I had an interesting and useful discussion recently with one of the consultants about HCT scores as mine 'wobble' around and so if it goes over 0.44 (44%) I have to have a venesection. I wanted to know why the measure seemed so variable when in the second half of last year it was more stable. The consultant explained that these measures are quite variable to the extent that they could take 2 blood samples 5 minutes apart, test on the same machine and yet get different results even though the equipment is calibrated correctly. Being tested on different machines may add a bit to the variability although the haematologists are responsible for ensuring the equipment is calibrated correctly. She admitted that it would be better to look at a range of samples taken more frequently to look at trends but practically this is impossible so she said they are comparing something that can be variable with a fixed target (HCT below 0.45). Other factors can influence HCT such as hydration, potentially anti-inflammatory supplements (as mentioned often here) and so on. I was curious as to whether foodstuffs containing iron could increase the results but she said no, as long as you don't take supplements containing added iron.
You don't say what your results were other than within "normal ranges". For a male without an MPN the normal HCT range is 0.4-0.5 but for us it has to be below 0.45. It may be that if you are tolerating hydroxy well then as it's only about 4 months since diagnosis, a bit more time is needed to adjust your treatment until things stabilise. FYI I was also originally told by a consultant that each venesection reduces HCT by 0.03 (3%). Don't forget as well that because we're both in the UK we may have less ability to influence choice of drug than those in the USA can (Hydroxy is the cheapest) although this shouldn't stop us from having an informed discussion with the specialist.
Totally agree with your comment regards being in the UK and having less influence in choice of drug. I live in Scotland and have had 3 consultations since diagnosis in March this year. Each time I have made my preference quite clear that I would prefer INF to HU but was told that HU was first line choice and only if it was not tolerated well would it change.
Now I do not agree that this should be the case I believe you should have the choice irrespective of age, I am 63, but appears to be the case in UK, at least in Scotland.
I spoke at length to the consultant and expressed my concerns and discussed pros and cons of both INF & HU as both have side effects you wouldn’t want, although you may get some or none at all. I have a consultation with an MPN Specialist in October so I am waiting until I see him until I start meds.
Thanks for sending such an informative reply, this really does help!My HCT has continuously come down from 0.7 to just below 0.45 it has just crept up to 0.49.
Like you I have a similar initial treatment.
This is an excellent forum, the majority of comments regarding hydroxy are not favourable but I guess you only here from the patients struggling with it no the ones that are doing fine.
I will pull together a response and speak to the specialist, Thanks!
Hi swim360, are you an avid swimmer? If so, I feel that it has been one of the best treatments for my PV! I was diagnosed over 20 years ago and as Hunter has said, everyone is different with how their PV affects them and how the available treatments will affect them. With that said, I am considered low risk PV even though I'm age 61. Personally, have tried PEG at the lowest dose and my liver enzymes shot through the roof and the side effects were terrible. My hematologist described me as being extremely sensitive to any drugs. I was on HU for only 2 months and it made my platelets decrease but did not do much for the HCT. Didn't want the skin cancer risk.
Have you had a recent BMB and NGS testing? These results will definitely guide you in the right direction in regards to treatment and the possibility of progression. I recently had both done, and after a 20 year span of using aspirin and venesections every 3-4 month as my treatment plan.......I've realized this as been the correct treatment for me. In short, my BMB results showed no signs of progression despite an AB of 93% for JAK2. Please note that there are two lines of thinking on the significance of AB. Both my Mayo MPN specialist and hematologist do NOT put a lot of emphasis on AB. My MPN specialist personally has studied this topic in detail and is cited in many research articles posted on this forum. My NGS result showed no evidence of driver mutations that could possibly encourage progression. Results showed I have 3 variants: CBL: 7 JAK2: 94 TET2: 5 The number is the variant frequency. My results have led me to the conclusion that venesections & aspirin and exercising everyday are working for me. Remember we are all different!! Best of wishes and keep swimming! Kerry
I started at 90 / week for 3 months but went up to 135 for the 4 th month and now at 180 / week. No issues really. Sometimes a touch of insomnia in the middle of the night usually 3 and 4 days after injection. I take my shot and pretty much go to sleep at night. Waking up to early makes you feel a bit off and a headache that morning. I was told to take a arthritis Tylenol (600) at bed time with injection and one when I wake up. Good advice.
I still have had 2 phlebotomy’s during this time. I still work full time. I am 53yrs.
I’m late to the party, but wanted to add to the other positive responses regarding pegylated interferon. I’ve been on 45mcg per week since January: no side effects and a complete haematological response. Good luck!
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