Back on Pegasys

[Planti]

Went off of Pegasys for almost 6 weeks with my MPN expert's grace as I was in haematological remission from ET (with JAK2) on 45ug every two weeks.

I had hoped that the back pain, fatigue and nausea after eating a regular sized meal, would go away. The nausea did but I was not more energetic or painless. Blood test at that point showed platelets 485, (first time over the high 300s since spring 2021).

So I have restarted Pegasys at 30ug and will monitor and continue on 30ug every two weeks as long as platelets stabilize.

Now that I know that my fatigue is due to being generally lazy and the back pain is arthritis I am fine with the Peg. It was worth a try to sort out what is to hold accountable for which symptom. I will work on the laziness.

All the best for the holiday season and I will toast to new developments in treatment for us all in the future!

[hunter5582]

Glad to hear that you have clarity about symptoms and a good plan to move forward.

There are promising treatments in development. Very good news for us all.

Wishing you a wonderful Holiday too.

[Jamesxyz in reply to hunter5582]

Hi,

What promising treatments are you referring to?

Thanks

[hunter5582 in reply to Jamesxyz]

There are several things in clinical trials and research that are very promising. New JAK inhibitors, expanding use of ropeginterferon for ET,, BET inhibitors, LSD-1 inhibitors, hepcidin meinetic, and more. There is a CALR vaccine based intervention in clinical trial as well. Recently, there is some possible move forward in being able to to more specifically target the JAK2 mutation is a similar way. There is a lot happening in the MPN research world. It is very promising.

You may fond this presentation of interest.

youtube.com/watch?v=6gegeBI...(Not working as expected?)

[Mishie14 in reply to hunter5582]

Another thank you, Hunter, for providing relevant information! This is a fascinating presentation and such a positive message. I hope that 2024 brings further good news about treatment protocols for MPN. Stay safe!

[Planti in reply to hunter5582]

Ah, thank you for your answer. You keep so well informed and we are all grateful.

[JustKeepSw1mming in reply to hunter5582]

thank you, Hunter!!

[Lilypen in reply to hunter5582]

It feels like laziness, yes, but I also believe a lot of my fatigue comes from having ET.

My feeling of fatigue coincided with the rise in my platelets.

I felt it before I knew of my diagnosis and before I started any medication. As I give into this new weariness, it does feel to me like I am now just being lazy. I also have to attribute some of it to arthritic back pain but despite this I was a very energetic person up till ET became a part of my life.

While getting used to this new feeling of tiredness, I believe I need a balance - to listen to my body & rest when I need to, but also to work on regaining energy. I do notice that exercising (starting gradually & building up) ) helps me a lot.

In summary, I must adjust to this new way of being, which I feel is a very manageable aspiration. I probably should not blame myself for being lazy as I was not a lazy person before.

Well done seeking answers by having a break from the medication. It helps to understand where you are at.

I wish you all the very best in getting your energy back. We can do this.

[hunter5582 in reply to Lilypen]

Love your approach to managing MPN fatigue. It is very balanced and reasonable. Combining self-discipline/pushing yourself with listening to your body is an optimal approach.

Wishing you success moving forward.

[Planti in reply to Lilypen]

Thank you for your hopeful, kind and useful message. I did not think that I had this sort of fatigue before diagnosis, however my platelets rose very sharply and I was getting used to retirement, pandemic and a new puppy at that time and I may have missed it!

I do parcel my limited energy, however I don't get much done in a day which is always somewhat disappointing. I give thanks for what I did.

Arthritis pain has been daunting but that has improved a bit so limited exercise is now possible. I will follow your lead and give myself kudos when I succeed. You are wise.

We can do it.

[lizzziep]

Hope all goes well 😊

[Lillysue19850705]

Best wishes to you.

[Planti in reply to Lillysue19850705]

Thanks!

[Junuary]

I had debilitating hip and leg pain after starting pegasys. Endless tests could not determine the reason. It turned out that it was tiny blood clots that weren’t detected by tests. It became clear after I had strokes and clots in my brain and spleen. My hem at Fred hutch refused to believe it was due to pegasys but after stopping it the debilitating pain I had for six weeks disappeared in just a few days! Because my dr refuses to connect the clots to pegasys, it won’t be “counted.” It makes me wonder how many times pegasys has caused pain and blood clots that are not recorded. No tests show the clots in my hip because they were so small, but my neurologist and other hems have no doubt it was the pegasys. The only way to verify is to take Eliquis and see if the pain goes away. Fortunately stopping pegasys helped my pain but that may not be enough for some people. It’s unfortunate that my specialist at Fred hutch is more concerned with her research than with my life. She wanted me to increase the pegasys! Instead I stopped it and recovered and was able to leave icu pain free. Good luck!

[PupsBestFriends in reply to Junuary]

Junuary, glad to hear you have found a solution for your pain. Chronic pain is terrible!

It's unfortunate you had to suffer with brain and spleen clots before you found out what was happening. It's infuriating when specialists refuse to consider all possibilities. I'm all for evidence based approaches, but it doesn't work when all evidence isn't considered.

I am no expert on interferons, but hasn't this micro clotting effect been documented? The article linked below about thrombotic microangiopathy with Type I Interferon seems relevant:

ncbi.nlm.nih.gov/pmc/articl...