I wanted to provide an update on the ongoing discussions I’ve been having with the consultants at Guys regarding the consideration of me starting Interferon as a youngish 41yr old low risk PV patient..
I’ve had a couple of consultations now spanning the last 3 months and discussed the potential benefits and risks.. the benefits being potential to reduce mutant Allele Burden and slow / reduce risk of progression (which is still being debated in the scientific community)… the risks being mood impact, flu symptoms, etc and medicalising someone who by all intensive purposes is fit and well.
we ran my blood work, full gene panel and mutation % and looked back over the 5 years history of counts…
when diagnosed my platelets were 850, hct around 44, mutant Allele 17% and only Jak2 mutation with no other sub mutations..
5 years on my bloods remain largely the same..
Platelets 720, HCT 45.5 Jak2 AB reduced slightly to 15% and still no other mutations..
the consultant under Claire Harrison felt at this precise moment in time, given I’m largely asymptomatic and maintaining a healthy lifestyle that we shouldn’t start just yet.. and revisit the question in 12m time.. by then there may be more evidence to consider… or even a trial emerging to enroll in..
I’m good with that.. all I wanted is to get the dialogue going and have an open discussion with the experts.. I felt if I really want to do this they’ll support me, so for now I’m going to continue doing what I’m doing and discuss again in 12m - unless something changes in the interim
Steve
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Great you’ve had a personal Interferon risk/benefit dialogue with the experts, and been reassured by this.
Most importantly, you’ve been listened to and the appropriate tests still show disease stability. I think the conclusion at this time is a sensible one.
It’s good to know that your team have got your back. Keeping the discussion open at 12 months is a good idea too.
No meds… just daily aspirin.. I asked whether the 2% reduction was of any note and they said not really but if it keeps dropping it may start becoming more interesting!
That sounds like a very informed and well considered decision. It is very good to have a MPN care team that actively engages you in shared decision making.
Really appreciate your post - I'm about to go into my Haematologist next week and have the same conversation. Generally (bar the odd glass of wine!) fit and healthy 40 year old.
The only thing missing in my puzzle is the lack of Allele Burden testing. Which isn't routinely done here in NZ.
Glad to see you have been able to make an informed choice, I'm going to push for a AB test and see where we sit.
Thanks! And best of luck in your push to get one… for me it makes sense to collect as much data as possible.. I understand there’s a cost associated with more tests, but given the recent research indicating AB as a potentially important characteristic then it should be routine to support the research efforts!!
Hi Steve this is interesting as it's just the place that I am currently at too - aside from being a bit older and that my plt counts are higher, so for 6 years now have elected no meds. I was diagnosed at 49 - now 55 - my results progressed in terms of plt early on; rising at one point from around 500 - to 1500, now around a 1000/1100. I am averaging about 3 or 4 venesections a year, HCT normally about .43, and yet its the WBC currently about 15 that is causing some concern and possibly to look at interferon - I had my annual chat with Guys on Monday, normally under a general heam team in a provincial hospital (York) - they advised going to see them in Nov to assess my decision towards Inteferon as an option then, I manage my condition by being as healthy as poss, and also taking omega oils and aspirin to assist in blood thinning. I have never had allele count, and it was said to me not on offer in the UK so interested to push for this now, assume that as my rates have not increased and in some cases lower than 2 or 3 years ago, then this allele mutation % has not increased?? I feel very well in myself (relative to me) and live an active, healthy lifestyle, working full time etc. although I sometimes wonder whether the meds would make me feel even better - I do experience fatigue but for a female middle aged, hormone changes are at play too so that confuses the overall picture somewhat - thanks Steve for sharing your part of the journey too. wishing you all the best, and my advice for what its worth would be at your age and with the lower counts to stay off the meds until you really feel that you have to go there.....
Sounds like you are getting the correct support which is great. It’s there if you need it and you have a plan. All sounds good to me. I guess you are taking aspirin
That’s really good . I am similar BUT at over 60 they advised interferon re strokes etc .
I also took consultation from Guys as my platelets were only 590. Inject just 45 monthly of Interferon & fit on that no side effects on this dose & platelets now 360 . Good you contacted the MPN experts 👍 Julia.
May I ask you your size and fitness level? I have a consultation set up with an MPN specialist, and wanted to talk about Interferon. Just need to know if it could work for me. I'm 72, and have lost weight in the past year and half to 110, but still pretty fit. I'm 5'8", female, and pretty skinny. Until a year or so ago, was riding and showing horses regularly, along with lots of farm work. After many tests to try to find the reason for the weight loss, they came up with nothing. I just know it is the Hydrea, so need an alternative. I am very sensitive to all drugs. My local hemos think of Interferon as an old drug to stay away from.
I am 68 sail cycle swim etc . If your Drs consult MPN experts like I did when I also got told Interferon was not as good as Hydroxy that was making me so ill. Glad you are getting to speak to one.
Fortunately I read lots about interferon the Peglated which is Peg Interferon Alfa-2a is an excellent drug. Lots of trials had been done with it with excellent results .I am afraid I educated myself on this complaint by none stop reading once I started Hydroxy which was horrendous reactions on my health awful experience on it. I am 62kgs now & 5’ 6 tall.
I was 66kgs before diagnosis but my change in foods I eat & low carbs keeps me steady & healthy on this .
I do fear that many Drs are blinkered into using Hydroxy only for ET they want a quick fix on platelet levels which it gives without much worry towards the horrendous health issues it causes on the way. My hair came out gastric problems exhausted pale & felt so ill . Platelets were only 590 but obsessed to drop them low . It did but wrecked my health.
I contacted Guys Hospital for treatment guidance as refused to continue on Hydroxy. Once I was approved Interferon it’s taken a year of practicing different doses until steady on 45 monthly. It is irrelevant of age that quality of life on medication is good .
I am so pleased I changed it is life changer for me to return to the health I was on before Hydroxy pushed it back.
I was active all my life in a very active job so once retired stayed the same.
NHS will be reluctant to advise Interferon as HU is the cheapest drug & as usual money gets put before many issues. Try it you will feel very good & some on this forum page have slowed their platelets amazingly 👍 Julia .
Hi, your situation is similar to mine, pretty fit, horses, cycling, gym etc but gradual weight loss (which I could ill afford )since taking hydroxy as well as gastric issues. I was keen to have involvement with Claire Harrison so emailed her asking advice. I saw my haematologist today and Claire Harrison had already contacted him in response to my email ( I felt as if I had been grassed up!!). So now we are going to give peg interferon a go and if it does not suite then we can 'abort the mission'. Very happy with outcome and will start the new med after my holidays. Good luck on your journey.
Your local Drs are from the era when the early IFNs were used for Hepatitis C. It was used in huge doses and was "non Pegylated". This meant it needed daily doses and crazy variations hi-low in the body. Few patients could tolerate it so it got a bad rep.
In the past 10-20 years pegylated types were developed. Currently this is Pegasys (PEG) and Besremi. These hold a steady level in the body, are taken weekly to monthly, and further for MPNs, we don't need such high doses.
But still not 100% risk free, I'm a very rare case with a really bad outcome. But I do recommend considering IFN.
I probably have a bit of a different opinion on this topic. My extensive research and discussions with MPN Specialists have lead me to believe that interferon should be started as soon as possible. Quite frankly, I don’t understand the wait and watch approach for a progressive disease. Many experts have advised to begin interferon at the earliest stage of the disease as possible in an attempt to halt or slow progression and improve overall survival. This is definitely a conversation between patient and doctors, but I’m also in my 40’s and opted to be treated with interferon to give me the best chance possible to slow progression.
It’s interesting to me that interferon has been used for decades to treat MPNs but yet there are still discussions about not having enough data. When I was first diagnosed 5 years ago, the debate was about whether HU or Interferon was more effective. It seems now (finally) that most agree that interferon is the best option for overall survival and progression free survival. There was a recent study published by Weill Cornell that stated that phlebotomy only was actually the least favorable treatment for overall survival and progression free survival. Not to mention the multiple unwanted symptoms that can be caused by phlebotomies and iron deficiency. I have also read that a normal life expectancy is possible for those treated with interferons.
One other interesting thing to note is that I have followed many patients who have posted about their disease course on social media, and just based on what I have read I have found that very few patients treated with interferon have progressed. I have seen where few patients have progressed but the large majority of patients who have progressed seemed to be treated with other therapies or none at all.
My opinion only, but I would dive into more recent research on interferons and have discussion with docs who are very familiar with prescribing the drug to get their opinion. I like research from Dr. Hasselbalch, Dr. Kiladjian, Dr. Gisslinger, and anything from Weill-Cornell.
I think the future will be combos with interferon such as Rux/interferon, ptg-300/interferon, maybe navitoclax/interferon.
Clearly, interferon is not for everyone for multiple reasons, but based on my extensive research I believe it is our best option for now if tolerated well. Good luck to you and everyone else navigating these difficult to treat diseases. I think the future is bright for all of us, but sure would be nice if our treatment path were a bit more clear.
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