Why isn’t interferon alpha working for me?

[Maxamber]

my platelet count is 1240. I have been injecting interferon alpha 90mg for 8 weeks , 2 blood tests 4 weeks apart showed a reduction of 3 and 17, total 20 in 2 months. My consultant is increasing my dose from this week to 180mg with blood test in 4 weeks time, why isn’t interferon working for me when it works very quickly for others to rapidly reduce platelets back to normal? I am anxious as it is very high and concerned about other health complications. Should I continue with an increased dose? Thanks 🙏

[Emmyroos]

Hi Max - it took FOUR months on 90mcg/weekly for my platelets to budge at all. Hang in there! Eight weeks is still pretty early.

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[Maxamber in reply to Emmyroos]

thanks Emmyroos for your words of encouragement 😃🙏

[Ggrana3192]

good luck , I hope it works for you. I did it for 6 months up to the highest dose and my platelets didn’t budge and mine were 1.6 million then my specialist had me stop it. I’m now doing Besremi and starting to get results after a year on it and even that I’m on highest dose of 500mcg. But that’s just me, many people do better. I hope the higher dose helps you , hang in there

[Maxamber in reply to Ggrana3192]

thanks Ggrana3192 for sharing your experience and advice, I’ll stick with it and feel more positive knowing it takes a while to work for other people too 😃🙏

[lindyloulou]

Hi there, it took quite a few months for mine to work, it was very gradual but now I am on 45 mg fortnightly so well worth the wait. Hope it continues to work for you. I am sure your doctor will know when and if to alter your dose or try something new. Wishing you all the best.

[Maxamber in reply to lindyloulou]

thanks lindyloulou for your supportive words 😃🙏

[JojoWonder]

Hi there Maxamber,

My understanding and experience is that interferon is a slow acting drug. I started on Pegasys 180mg when first diagnosed with platelets touching 1500. My Haematologist then added in Hydroxy to aid the decline as Interferon alone wasn’t working quickly enough. I took both drugs for 8 months before dropping Hydroxy. Fast forward 3 years and my bloods are, I’m told, perfect. My platelets are around 200 and I have recently decreased my dose to 90mg every 10 days. Any side effects have dimmed the longer I have been taking Pegasys. You don’t mention your mutation. I have Cal-R. People with this mutation tend to have higher platelet numbers - which can seem alarming - but have a lower clot risk than those with Jak-2. They do have a higher bleed risk. High numbers don’t necessarily mean you are in more danger,

Try not to stress too much, easier said than done I know. I recently attended a MPN Voice forum and met lots of people with MPN’s doing amazingly. I might take a while to get the right fit/dosage medication wise but I’m confident that like me, you’ll get there. 4 years ago when I was diagnosed with a 3 month old baby in my arms I was besides myself with anxiety, so I get it, but just give it time.

Sending good vibes your way. Reach out if I can help in any way x

[Maxamber in reply to JojoWonder]

thanks JojoWonder for taking the time to write. I unusually don’t have a mutation. I’ll stick with it and feel more positive from your and other’s comments that it will work for me 😃🙏

[shiftzz]

It took me a long time for Pega to keep my blood under control

[Maxamber in reply to shiftzz]

thanks for your support, I’ll stick with it 😃

[ciye]

After 14 months on interferon my platelets didn't drop, I couldn't cope with the side effects, which I blamed on everything but interferon, I so wanted it to work. I have reluctantly switched back to hydroxy and have seen my platelets fall.

[Maxamber in reply to ciye]

ciye thanks for sharing your experience 🙏😃

[Hopetohelp]

Peg can take a while to kick in for a lot of us. Mine took about a year if I remember correctly, but it also coincided with me moving the injections to the middle of the fridge. I was keeping them in the pull out draw at the bottom of fridge and it was too cold. I invested in a couple of very accurate thermometers and found it was zero degrees in that draw! Moved them up to middle of fridge where it is exactly 5 degrees. Might be worth checking out. The injections should be kept between 2 and 8 degrees. Hope peg works for you soon

[Maxamber in reply to Hopetohelp]

@hopetohelp thanks for your comments and suggestions 🙏😃

[monarch5000]

If you have not had a prior history of blood clots, I'd suggest staying at 90 mcg for another 4 months or going no higher than 110 or 135 mcg. A 180 mcg dose risks bringing on side effects that might cause you to stop taking the drug altogether and then you might miss out on the documented (in PV and likely ET) myelofibrosis free survival and overall survival benefits of interferon.

[Maxamber in reply to monarch5000]

thanks for your comments, very interesting , I had been led to believe that my PC would reduce quickly but it seems that’s not the case and we should persevere for much longer… as long as it’s going down it’s good 👍🏻 😃 I will ask why my consultant wants to double the dose as at the moment I’m getting very few side affects. Am I worrying unnecessarily about the risk of clots, stroke etc at a PC of 1240?? Thanks for your time 🙏

[Maxamber in reply to monarch5000]

monarch5000 thanks for your advice

[KLCTJC]

I just started Besremi. As it did drop my platelets some not normal just yet, but my doctor said it can take over a year and in my case he said super tight control isn’t necessary. Wants it under a million, but I have PV. He just reassured me that it is slow. So, I was thrilled when they dropped after 2 intro doses but I am expecting nothing significant for a year. Hope that is reassuring. Hang in there!

[Maxamber in reply to KLCTJC]

KLCTJC thanks for your supportive message 😃🙏

[Ovidess in reply to KLCTJC]

I also just started on twice a month Besremi this January. After injection # 3, which caused extra lethargy, my platelets went down 20% and the hematocrit fell into normal, so no phlebotomy needed for the second session in a row. Today I get injection # 4…

[Maxamber in reply to Ovidess]

Ovidess thanks for sharing 😃🙏

[hunter5582]

We are all different in how we respond. It simply takes longer for some to respond than others. RyanCB recently posted an excellent webinar about interferon. It is definitely worth watching.

healthunlocked.com/mpnvoice...

[Maxamber in reply to hunter5582]

hunter5582 thanks for your comments and advice 😃🙏

[BrotherDay]

Hey. Do you notice any effect on WBC (if they were higher than normal) ?

For me personally it took about 1 month for PLT to start to budge and 3 months for RBC to start to budge, but WBC started to decline after just 2 shots/weeks.

Im not a doctor, but i'd say that if you have positive reaction from WBC, chances are good you'll see other blood cells follow.

But regardless, 8 weeks is not enough time to say anything definite. Keep going !

Also, ask you doctor if you could add N-acetyl cysteine (NAC) supplement to your diet. Some research has shown that it enhances the response to interferon.

And also ask about adding some natural anti-inflammatory supplements like curcumin.

[Maxamber in reply to BrotherDay]

BrotherDay thanks so much for the advice😃🙏 it’s good to hear that it takes time. It’s been suggested by my haematologist that i increase to 135 mg for 4 weeks with a blood test to check effectiveness…. Will persevere and be more patient! don’t want to risk any higher dose than 135 due to side effects 🙄

[Solyesh]

Just here to echo all the previous good replies..I agree with BrotherDay - it took bout 3 months for me to see a measurable effect on platelets but WBC were almost immediately brought into control....either way my MPN specialist told me that we would not even really think about how well it might be working until I had been on Peg at a stable dose (and platelets more or less in line) for a year...it took almost a year to just get to the right dose/time interval - hopefully we are here now and we'll retest my allele burden next Jan....

[Maxamber in reply to Solyesh]

Solyesh thanks for your support, I appreciate you taking the time to share 😃🙏

[MAP44]

Hi Maxamber,

I was diagnosed at 51 yrs with ET after a BMB but we realized it was PV because it was not only my platelets that were rising.

I had several Phlebotomy over 12 months and started on pegasys 90. I did not have any issues with the drug so after 4 months ( to avoid a phlebotomy my MPN specialist and I raised the dose to 135 weekly and a 6 months to 180. I only kept the high dose for a month and went to 135 for another month and at 90. The higher doses certainly worked out wonderfully for my bloods. It will be a year in April that I started.

Every body reacts differently to medications. Best of luck with the higher dose. Drink lots of water, always easiest to do if you top load and drink a few glasses on awakening in the morning and after lunch.

Hope all goes well. I found a bit of insomnia a few days after the higher shots but that did not remain when I went back to a 90 dose. Good luck 🍀

[Maxamber in reply to MAP44]

MAP44 thats really encouraging 😃 thank you for sharing your experience, I feel more positive about interferon working for me. 🙏😃

[PhysAssist]

Hi Maxamber,

I know this is a little late in coming, but the comments above are all pretty spot-on.

I have PV, and have been on Besremi [INF] for approx. 7 months. We have been increasing the dose by 50 mcg every month from it's 50 mcg initial dose, because my blood counts have not budged at all really. The only reason I haven't been getting blood taken [phlebotomized] regularly throughout, is because I stubbornly resist it as long as my Hct stays under 50.

For some background: I lived with my Hct in the top of the 50's and into the low 60's for at least a decade before I was diagnosed with PV, and I never had any clotting incidents- mostly, we think, because i have had venous insufficiency, for at least 18 years, so for all that time, I have been taking anywhere from 160 to 325 mg of aspirin daily, along with scrupulously wearing [knee-high medical-grade] compression stockings whenever I am sedentary or sitting for any length of time at all.

That said, my Hct was most recently 52, so 2 days ago, I went and let the leaches/vampires do their thing. I'm currently at 450 mcg every 2 weeks, as of the last dose I injected on Saturday 4/15/23, which was the first time I ever felt ANY effects from the INF.

What I felt was profound muscle and body aches, fatigue, and malaise Sunday morning when I woke up. If I didn't know better [mainly because of the lack of a fever] I would have thought I had caught influenza [or COVID again], but it had to be the INF- which has finally made me hopeful that it is also having some actual treatment effect. But for the proof in the pudding, we'll just have to wait and see what my next and following bloodwork results say.

Hang in there, we all need to in this for the long haul!!

Best,

PA