interferon alpha effectiveness for ET

[Maxamber]

hi again 😃 I recently asked how long it takes for interferon alpha perg to start working and decrease my platelet count. My diagnosis is ER (triple negative). I have been injecting weekly for 12 weeks now, 8 weeks at 90mg and the last 4 weeks at 135mg. My platelet count remains stubbornly at 1300😳. My haematologist has advised me to complete 3 more weeks at 135mg , do another blood test and if not much improvement increase the dose to 180mg . I am tolerating the drug quite well and injecting correctly….. has anyone else had the same issue and what course of action was suggested? I’m anxious to get my platelet count under control….. would it be a good idea to ask to switch to another drug or stick with the treatment suggested? I’m 56 and in good health 💃🏻 any advice appreciated 😃

[hunter5582]

We all react differently to each of the medication options. I responded quite well to a low dose, drooping my PLTs from the 700s to the 400s in 8 weeks at 45mcg Pegasys. Others, however, have reported Pegasys taking a lot longer to get the desired hematological response, If you are tolerating the PEG dose and wish to continue at a higher dose, then that would make sense to try. If you are refractory to PEG, then there are other options, including hydroxycarbamide, Anagrelide, and Jakavi. There may also be some meds in clinical trials you could consider. A MPN specialist can give you the best guidance on next steps.

Please do let us know how you get on.

[Grendall]

hi Maxamber

I started on 45mg last august, went up to 90mg around Oct/nov, then in Jan increased to 135mg, once I increased to that I had terrible Insomnia… I was due for a telephone appointment and spoke to a different Heamo this time.she proceeded to tell me that Peg is NOT to reduce platelets but to help with symptoms and that I was put on it for that reason last year!!! She told me to reduce back to 90mg (which I am ok with) although my platelets have never reduced (I hover around 700 mark)

We get told so many different things by different doctors, especially in the UK that how do we know who’s right or wrong??

I would say right now that due to mine never reducing but the Peg reducing all my symptoms I am kind of inclined to believe this doctor but non of them are MPN. Specialists so how do we actually know, we just do what we are told and believe what we are told, even though we are told different things from each doctor, I’m just totally confused right now….. 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️ xx

[Wyebird in reply to Grendall]

so I’m going g to confuse you even more. I thought Peg got right to the heart of things and did reduce the production of platelets . MPN voice.org knows best

[Maxamber in reply to Grendall]

thanks Grendall for your comments….. are success rates of reducing platelets really that specific to each individual?? Why does interferon alpha consistently work for everyone? I think I will seek a 2nd opinion with a Uk mpn specialist 😃 good idea 👍🏻

[Exeter21 in reply to Grendall]

make appointment with MPN to speak to . I did once on Interferon when I had a varied suggestion of doseage suggestions from Drs not experts in this treatment.

I was so pleased I did as now on a smaller doseage that works. Listening to an MPN is like finding an electrician to fix your wiring not the gas man 👍. MPNin UK are listed on this forum site & contactable by email for queries & their expert knowledge of MPN diseases.

[Grendall in reply to Exeter21]

hi there,

When I tried to get to speak to one I was told I would have to be referred from my current heamo so you can5 win…

I am in no way trying to be negative at all, I have just been told so many differing things each time I have gone to my appointments I’m confused as to what to believe anymore, I just carry on whilst my other blood numbers are ok xx

[Exeter21 in reply to Grendall]

yes I had same problem. But I actually emailed theMPN department and explained my problem I also got a reply & a telephone call from Professor Harrison who sorted my doseage & oversees my Haemotology now . 👍

[monarch5000]

I'm not a doc, but I've heard triple negative ET tends to be harder to control than Jak2 or Calr ET and have a more aggressive disease course. If I were in your shoes I would stay the course at 135 mcg for 3 more months.

[Maxamber in reply to monarch5000]

thanks for your message, I haven’t been able to find much to research about triple negative et…. It’s been implied it’s a good thing and less likely to mutate to anything nasty 😷 my platelet count is 1300 and I am unclear if I am more at risk of bleeding than clots causing complications….. how much higher than a healthy 56 year old woman is my risk of these things occurring? It’s hard when you don’t have a benchmark risk to put any elevated risk in context.

[monarch5000 in reply to Maxamber]

You're right. I confused the prognosis of triple negative ET vs triple negative PMF. The correct info is: "In PMF, triple-negative status is associated with poorer survival, while triple-negative ETs have favorable prognosis."

[NCB1983]

hi maxamber!

I had a similar experience and my platelets stayed high for eight months, stubbornly refusing to reduce despite me taking interferon. My haematologist and I gradually increased the dose from 45, to 90 to 180. Even at 180 my platelets didn’t budge for ages, and then they did! It wasn’t a sudden drop but more of a gradual decline in platelets. When my platelets became within normal ranges, we reduced my weekly interferon dose to 135 and I’ve been on that dose ever since and platelets are stable. So, my advice would be…. Stick with it and be patient. I’m lucky because I don’t get many side effects, I get disturbed sleep and anxious/grumpy the day after I do the injection (but now I know about the symptoms my body experiences I can cope with them because I have something to associate them with). I find exercise helps, even when I’m tired and irritable the endorphins help me. I certainly feel much worse when I don’t exercise regularly. I hope that sharing my experience helps you x

[Maxamber in reply to NCB1983]

thanks NCB1983 for your encouragement 😃 I too find a daily workout at the gym a good way of coping both mentally and physically with ET, I’m doing everything in my control to keep my bp , cholesterol and weight low to mitigate the risk of clots. Should I be concerned my platelet count remains at 1300 which is quite high? This number makes me quite anxious, apart from fatigue I don’t really have any symptoms for ET or from interferon alpha…. My haematologist even asked me yesterday if I was injecting 135 mg correctly if at all😳😳😳 I wonder if taking bothe IA and hydroxycarbamide could be an option for me? Do you see an MPN specialist? If so can you advise who please? Thanks 🙏

[NCB1983 in reply to Maxamber]

Hi Mazamber, I can't comment on your medical questions, sorry. Each of us is so different. The only person who can guide you is your haematologist or MNP specialist. I see a haematologist and he is wonderful! I can email him my questions or concerns and he always gets back to me or asks my haemo nurse to give me a call. Are you in the UK?

[Wyebird]

you must be feeling despondent. Sometimes Peg takes a while to drop. I love it. It’s worked well for me . Did you know you could combine it with Hydroxicarbomide? Not sure on dosage levels. Do you have an MPN specialist? X

[Maxamber in reply to Wyebird]

Wyebird could you recommend a specialist please? I take vitamin supplements, tumeric, thyroxine and hrt daily, as well as b12 injections every 10 weeks. Could any of these meds suppress effectiveness of interferon alpha? Thanks for your help🙏

[Wyebird in reply to Maxamber]

where do you live? I’m under Proff Harrison

[Maxamber in reply to Wyebird]

I’m in Essex, Uk 🇬🇧

[Wyebird in reply to Maxamber]

I’ve sent you a private message

[Looolooo]

You have to be really patient. It took me 9 months at 90mcg a week but response is complete. No more phlebotomy and no side effects. But it will work.

[Maxamber in reply to Looolooo]

Loolooloo thanks for you positive comment which gives me hope 🙏😃 were your platelets as high as mine (1300) when you started treatment on IA?

[Looolooo in reply to Maxamber]

Not quite. Up in high 800s though. Now in mid 200s.

[Exeter21]

Have you checked temperature of shelf in fridge you store it in . I recently bought a fridge thermometer & mine was too cold . I read that it can affect the interferon . Worth a check . Mine weekly after 6 weeks bought platelets down however I was not tolerating it that frequent. I am now on monthly . 👍

[MAP44]

Hi

This is a graph of my platelets. The big kick down happened at a dose of 180. I did 90 for a long time no issues then up to 135 for 4 weeks which started the downward trend but 180 for 4 weeks was what really started the slide down. I returned to 90 and have remained there. Been taking Pegasys for a year now.

Platelets sit around 300 now. I feel great. Brain fog lifted when platelets came down.

Good luck, drink lots of water!

54 yr old female, PV. 🇨🇦

My Doctor is an MPN Specialist

Graph of platelet count dropping