Good News: Pegasys finally working! Bad News: Pulmonary embolus!

[Minify]

First the good news: After 7 months of gradually increasing dosages, the Pegasys finally kicked in, as members of this forum told me it would. For months, both my platelets and Hct slowly rose, and it wasn’t until I got to 180mcg/week that the numbers started coming down. I’ve been on the max dose for 8 weeks now, and last bloodwork showed platelets 393, Hct 41. The highest my labs got (before the last dose increase) was 900 platelets and 47 Hct). I’ve tolerated the Pegasys well, with only one brief rise in liver enzymes after one of the dose increases, and no other side effects.

Bad news: Right around the time of the last dose increase (when my numbers were at their highest), I had multiple large pulmonary emboli (submassive category). Because of the elevated right heart pressure, I also had an MI at the time of the PE. This event came at the heels of a long trip/flights and despite taking every travel precaution (phlebotomy before and after trip, hydration, compression socks, exercise, etc). I even had two negative lower extremity ultrasounds prior to the PE! It is not clear where the PE originated. I do have a concern that my interferon may have degraded while traveling, as it was hard to it at keep a steady temperature - so it’s possible that up to 3 doses were unstable. I have racked my brain trying to figure out how it happened, but as many things in life… sometimes bad stuff happens even when we do everything in our power to prevent.

At any rate, I am now 2 months out from the PE and almost fully recovered. I am on lifelong Apixaban, and concurrently still taking baby ASA until further cardiac evaluation, which will happen in the next two weeks. I am hopeful that I will have a full recovery. I feel strong and well!

If it hadn’t been for the support and shared experiences of others in this forum, I would have lost hope that the Pegasys would eventually work. Thank you for keeping me hopeful!

I know there are others out there struggling with waiting for the Pegasys to work. Hang in there! Slow and steady wins the race.

[hunter5582]

I am glad to hear that the Pegasys has finally kicked in. It is sometimes a marathon rather than a sprint. Very sorry to hear about the PE and MI. That is very scary. It sounds like you did everything possible to prevent any events. Sometimes bad stuff happens despite our best efforts.

I am not sure that your Pegasys would have had time to get warm enough for long enough to degrade the medicine. That is really a question for the manufacturer. It would be interesting to learn what they have to say. After my last long trip I invested in a better cooler bag. It seems to do a good job with two ice packs inserted.

Please do let us know if you learn anything about whether your Pegasys did degrade. Meanwhile, stay well and best wishes for a full recovery.

[Minify in reply to hunter5582]

Thanks, Hunter. I will probably never know whether the Pegasys degraded. I also purchased a good system prior to the trip (with battery operated refrigeration) which worked very well to maintain a steady temp for most of the trip. The “overheating” episode happened on the first leg of our flight - there was a bird strike on takeoff, causing a skid and subsequent fire in the gears/brakes of the plane. In the hubbub, the battery on my unit was accidentally switched on. But the fan was not vented, so the unit overheated. There was a lot of chaos and it was possibly overheated for about an hour. In the future, I’ll know to remove the battery so it cannot accidentally get turned on. Old fashioned ice packs would have been safer!

I chalk all this down to a series of weird events… and leads me to the truth that no matter how hard I try to control events… sometimes bad stuff just happens. And I just need to roll with it.

I am incredibly grateful for the excellent medical care I’ve received, and have a lot of hope that I will have a full recovery from this event.

[hunter5582 in reply to Minify]

What a truly terrific attitude! You could give lessons in resilience.

Wishing you all the best as you move forward.

[ritaandscooter1 in reply to Minify]

Boy I 2nd what Hunter said.........You have a terrific attitude in the face of adversity! We all could take lessons from you. It sounds like you covered all your bases before flying and just rolled with the punches with a wonderful positive attitude. Thanks for sharing! Kerry

[brightlys]

I'm glad the Pegasys is working! I'm sorry about the PE. It really sounds like you did everything you could do to prevent it but that's so scary!

[jewelmaker]

So sorry that you had to go through that but glad you are doing well now. You have amazing strength.

[Pogm]

Hi,

Just asking: is Apixiban an oral anticoagulant? I am on Xarelto and was advised by several doctors not to take aspirin while on the drug. I am sure you have consulted, if not, it would be wise to make sure that aspirin is allowed while on this med. Glad to hear you are doing much better and continue to do so!

[Minify in reply to Pogm]

Yes, Apixiban is an oral anticoagulant, in same drug class as Xarelto. They interrupt the clotting pathway and have a different anti clotting mechanism than aspirin, which makes the platelets “slick”. Because of the extent of the PE and my underlying disease which increases potential for clotting, it was determined that I should be on both until I was further along in recovery, and had a full cardiac evaluation. We are going to re-evaluate and I may come off aspirin in the future. The important thing is that the two classes of drug (Aspirin and Direct Action Anticoagulants) have different mechanisms to inhibit clotting. Thanks for asking. It is a good question, and typically folks don’t take both.

[MAP44]

Hope everything gets figured out so you can continue to travel and enjoy life. 🍀❤️

[Minify]

Thank you,Map44. I feel confident I will!

[PhysAssist]

Hi Minify,

I'm totally happy and sad for you all at the same time.

It sounds like you survived the "The Perfect Storm" , which occurred even though you were clearly doing everything possible and right to avoid it.

I'm so very glad to hear that you're coming out of it relatively unscathed- there are worse things that taking Apixaban every day.

There may be good reason to stay on both Aspirin and the Apixaban, with minimal if any extra bleeding risk, so be sure to ask your Heme MD about it.

Combining antiplatelet and anticoagulant therapy in cardiovascular disease

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

Although the article is specifically about patients with coronary artery disease, as an MPN- patient, you/we may have a similar risk profile, and benefit.

Best regards,

PA

[Wyebird]

thrilled regarding Peg. Awful regarding your PE. I do hope you will soon be well. I’m over 2 yrs on Peg and still reducing the dose. To start I fluctuated between 90 units per week and the a fortnight. Settling on every 19 days then 2 weeks 17 days, 25 days now I’m about to start every 28 days. I do hope similar will happen for you.