I have heard a few people say interferon slows down progression of et? Does anyone know is this true? My haemo is leaving me on no meds only aspirin which am happy about but if I have a chance to slow down progression I'd rather take it
Does interferon slow progression of et? - MPN Voice
Does interferon slow progression of et?
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Irishgal12
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Interferon is used to suppress the over production of blood cells, so yes you could say it would slow down any potential progression to PV or MF. Remember that you have a 80% chance that you will not progress to anything else at all. Depending on your individual risk (age/blood count) - Aspirin is usually all that is required
So should haematologist not px regardless if it slows progression
It has quite a few potential side effects, so not a drug you would want to take by choice, unless absolutely necessary
I didn’t know about “80% chance of not progressing”. How is that?
I was told 95 percent
I was told 93% of not progress if you have JAK2 mutation,and 85% of not progress if you don't have the Jak2
Although it seems higher to me from what i have received from this site
Yes but then am thinking is that because we are on these sites so will hear about it
Yes.. i am thinking that to and i hope it's this way
I honestly think we need to start listening to our haematologist they are the ones that should know the answers and sometimes these groups make me more anxious
These are my background thoughts also! I assume this is a way of me believing that i have some kind of control. Totally false i know!
I think if we think rationally we should trust them it's our anxiety which mislead us x
Did you read what Moshe Talpaz wrote about interferon recently ? : « I studied it in 1998; it was a long time ago. A patient who I started with essential thrombocythemia but JAK2 positivity. I started to treat her in the late 1980s. And she developed a complete molecular response after 25 years. She is in remission now, after 30 years on therapy. She still gets it on and off. »
onclive.com/peer-exchange/m...
Why arent doctors prescribe this
They do
My haematologist says just aspirin
I suppose that’s up to you to decide whether your haemo is the right one for you.
I dont know how do I know? I would like to think he knows
I really think a second opinion with an MPN specialist is a must. With the greatest respect to haematologists they are generally not up to date with the ever changing world of mpn's
I have asked for a referral he said he can only refer me after bmb results
I’ve had PV for at least 15 years - it’s only now because of my age that I have started on Interferon. Before that Aspirin was all that was required. I’d rather still only be taking them, than having to inject each week and then feeling rough the next day
Thinks thst is all you need. I like these more optimistic replies. It can be cured you know, so try not to worry.
Mine too! I have PV and only on aspirin. I have the same anxiety as you
Anxiety is awful
The NHS isn’t limitless. The decision is sometimes complicated but mostly to do with the patients risk of a blood clot and also what symptoms they have impacting on their quality of life. All drugs have a potential to have a negative impact.
I fought for Pegasys (peg interferon) over 3 years ago. The argument I put forward, to NHS Scotland, was I had a poor QoL and a high risk of developing blood clot.
Money !!!!
Hydroxy is cheap so they automatically prescribe that. Also it's a postcode lottery as to whether you can get it. I can't in Merseyside but you can in Cheshire, utter madness.
Oh I didnt realise this. I am about to move area too
It's mandatory to go on meds at age 60. I'm fighting for peg interferon as I've previously had skin cancer and that is a side effect of hydroxycarbomide . I have a pre dispotiion to it so am fighting for it on those grounds. I'm in Prescot, I can't get it here, but if I lived down the road in Warrington I could !
Not sure if you can get peg in Wigan/Leigh, what area are you moving too ?
N ireland
Hi. Just seen that you are moving to Northern Ireland. If its happening within the next few momths I would recommend that your speak to your haematologist about getting a referral to an MPN specialist over there. You don't want to have to start over once you get there.
Moving is stressful enough as it is.
Yes my worry am hoping my haematologist will refer me to another haematologist but I dont mind coming to England to see specialists periodically
Therw are some really good MPN specialists in Northern Ireland. Much easier than a trip across the Irish Sea.
Is there do u know who ?
Mary Frances McMullin, works at Queens University Belfast.
Oh is she thats good x
I am prescribed it as I am high risk and have had a thrombiotic event, a clot which caused a heart attack... I am jak2 + and have not progreeed much since my first BMB in 2017 to the one I had last year. Everybody is different and how they progress or does not progresses but the main reason for my hemo to perscribe was to maintain my levels at a normal level which could not be done with aspirin alone ( platelets at 2.3 million when DX). What hospital do u attend ? Different hemo have different plans for different patients .. have u been on HU or AG ? Or just aspirin .
D
Just aspirin for now
Wigan and leigh
Asprin is the standard treatment for ET patients classified as low risk. Other treatments are not normally used until you move into the high risk category based on age, very high platelet counts or history of thrombotic events.
Interferon can have a wide range of side effects, some serious and severe, and the drug can not be tolerated by everyone.
It's still an option if circumstances change but if you are feeling well now any benefits are only theoretical.
The "cure" might be worse than the disease.
Thank you seems people tend to tolerate hu better
Hydroxyurea can be really problematic for some people, others get on with it really well.
The drugs available for MPNs are improving with time, with fewer side effects.
I hope that you are feeling a little less anxious about your health and prospects for the future. Its not what anyone wants but it is not a barrier to having a great life.
Plenty of support on the forum when you need it.
Some days are better then others. I just feel my haematologist is playing it down he said meds have min side effects if any x
I hope you are planning to attend a patient day later in the year. A chance to chat with others with ET and to have a laugh about how some doctors play down the symptoms of MPNs and the medications used.
Absolutely
Wish I could hop across the pond and join y'all for one of those patient days. I get a hoot out of how the docs respond to us sometimes too. Laughing is way better than getting frustrated. Sometimes you just have to chuckle then move forward on asserting yourself for what you need addressed.
Hope you make it to your event. We have something coming up in Washington DC (near where I live in West Virginia) that I am planning to attend.
All the best to all of y'all.
What is going on in DC? I am in NC but would travel for a good event!
No date set yet. Here is the announcement I got by email. You can get on the distribution list for MPN Advocacy & Education International at the URL below.
Save the Date for Upcoming MPN Patient Events
MPN Advocacy & Education International has opened registration for the first patient education program in 2020. On April 16, we are returning to San Antonio, Texas at the invitation of Dr. Ruben Mesa, UT Health San Antonio. Dr. Laura Michaelis and Dr. Robyn Scherber will also join us, as well as first-time presenters for MPN A&EI, Dr. Abe Yacoub, Dr. Jasleen Randhawa, and Dr. Scott Ulmer. Click here to view details and register.
In May, we are scheduling an event in Washington, DC. The date, venue, and speakers are being confirmed. On September 25, the 6th Annual Women & MPN Conference will be held in San Francisco, CA. In November, we will be heading to Brisbane, Australia, and other U.S. cities are being confirmed. For additional details and event updates, check MPN Advocacy & Education International's website.(mpnadvocacy.com). We look forward to seeing you!
Come to the one in Chester in September.
Nice clear reply.
Hi there. I am in exactly the same boat – ET that seems to be partly on the way to transforming (big spleen) but not at any fast rate (bloods stable for the last two years). I am also on just aspirin and I am treated at a hospital with well-regarded MPN specialists. I have brought up interferon once and the general thinking seemed to be that evidence for slowing progression was not conclusive. I think they balance this with the low likelihood of the disease transforming in the near future and the sometimes significant side effects of the drug which can include depression (which, in my case, I do have a slight history of, although not sure they know that). So my docs are not overly keen on the idea although the option seems to be there. Other docs, particularly in the US, seem more in favour of getting people on interferon. I would advise reading as much as you can and if possible seeing an MPN specialist so you can then make your own decision - I have and think on balance I am happy just on my aspirin for now. Good luck!
In my opinion aspirin is not a treatment in full sense of this word. You just fight symptoms and reduce possibility of clots etc. Same for hydroxy, I think about it as aspirin for bone marrow, once you get off of it, everything returns back. On interferon you have a chance for remission and slowing down the progression, this looks like the best option if you can tolerate it. That's why I decided to give it a try, without relying on what doctors say. I visited several specialists, 2 said no treatment required, 1 said I can try interferon, pegasys preferably. So after one year of researching, I decided to start to inject to pegasys (I'm buying it by myself). I'm on my 7 week of 45mcg injections, platelets down to 380-450 from 640-860, RBC to 5.1-5.3 from 5.6, HCT to 45-47 from 48-50. At the moment, I didn't notice any major side effects, had very mild flue like symptoms once. The biggest downside is my liver enzymes, which are a bit high right now, but I'm working on solving this somehow.
Wow I agree but at the same time I feel I should trust the doctor
Every med has its side effects, as for what i know there is no cure for MPNs, just management with treatment since ur young the haemo gave u aspirin only and wait n watch strategy , even aspirin has side effects on the body , u can may be stretch it on aspirin on how ppl have been for years without any other meds and pray it doesnt transform or progresses , im not sure about the percentage of fibrosis that develops with time due to bone marrow making excess platelets , however no body can predict , aspirin resolves headaches abd body pain etc but i do feel fatigue abd lathargic at times im 32 and on aspirin only my hemo said if its platelets go above 1200 ul need hydrea so i pray dont go tht level somehow, diet doesnt effect platelets he also said ? Idk if anyone of u got the same answers .....
Exactly same answers
My haem has me only on aspirin and says better save our weapons for the future.
Some others consider more appropriate to tackle a cancer early than late with a molecule which could modify the course of the disease.
In case one has MF already it makes sense. Otherwise why?
It does not make sense at all for some haems:
« We and others have argued against the “watch and wait” strategy in low‐risk patients. Our study emphasizes the urgent need to rethink this approach »
Haematologist has to follow national guidelines must be a reason why we are not all on interferon
Is mf the final stage of mpn? If so then it must be inevitable? Although my haemo says it's rare
Μy platelets started rising slowly 20 years ago. I am 17 years on aspirin with platelets stable around 750. After taking Hydro for 4 months, (my doctor insisted due to my age) and feeling awful with extreme fatigue( my whole body was aching with fatigue) and three consecutive colds with antibiotics, and my ears turning brown, I stopped it following the advice of my haematologist. The fatigue disappeared but my platelets rose to a million and my whites rose a bit while all those years they were normal. Now I am continuing the coated aspirin 80mg. and my platelets dropped to 850 and also the whites lowered on their own fortunately!! Apart from the pruritus no other symptoms. I would be happy if my platelets go down to where they were before and my whites get normal again. But who knows what lies ahead?
That's the worry isnt it.
When u say fatigue? How bad? I get tired and could easily sleep all day it's not new for me
I was on aspirin for about 10 years before my platelets reached a level where a lumbar puncture was performed and I was formally diagnosed with ET. I'm 69 now so I can only assume your platelet count is still OK. Count your blessings as some platelet reducing drugs have side effects. I'm on Hydroxycarbamide and platelets became normal after about 6 months. I suspect I'll be on this drug for life. All the best!
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