Interferon effects: Hi,I've started my journey... - MPN Voice

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Interferon effects

kamiilos profile image
8 Replies

Hi,I've started my journey with Pegasys about 5 weeks ago. I am on 45mcg weekly.

Before Pegasys my platelets were close to 600 and HCT around 0.55

Today my platelets dropped to 297 and HCT to 0.47 in just 5 or 6 weeks.

Should I be happy or concern for fast adjustment ?

I thought interferon achieves full potential in 48 weeks ? Or I misread and it meant 4 to 8 weeks ?

Thank you

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kamiilos
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8 Replies
hunter5582 profile image
hunter5582

I would take that as being very good news. We are all different in how we respond to Pegasys and the other treatment options. Some respond much more quickly to it than others. I also had a rapid response to a low dose with minimal side effects. My quality of life has improved significantly in addition to maintaining a complete hematologic response. Additionally, my JAK2 allele burden dropped from 38% to 9% in 18 months on a low dose of Pegasys then later Besremi.

Hopefully you will find that you also have a favorable long-term response.

lizzziep profile image
lizzziep

My platelets dropped significantly on my first month of peg. Haematologist was pleased with that.

AndyT profile image
AndyT

Some people do take a while to respond to Pegasys but some of us also respond quickly - in my case about 4 to 6 weeks like you.

As Hunter has said, I’d take that as good news and it hopefully means that you and your doctor can soon consider extending the interval between doses. I’m now just on a maintenance dose of 45mcg every four weeks and have been on Pegasys for 8 years with no significant side effects.

Good luck!

kamiilos profile image
kamiilos in reply toAndyT

Thanks Andy for the comment contribution, I've requested another visit in 4 weeks as I guess I do not want the counts to drop to low. Wishing you well.

Hopetohelp profile image
Hopetohelp

Sounds good to me. Sounds like you are one of the lucky ones that responds quickly to peg. Haematologist will keep an eye on you and who knows may even reduce your dose

PhysAssist profile image
PhysAssist

Hi kamiilos,

All of the prior respondents are correct, but I have to add for myself:

I'm jealous!

Despite my year-plus of treatment with Besremi, my labs have not responded anywhere nearly as quickly and completely as yours have.

Good for you- may it always be so for you!

Best,

PA

kamiilos profile image
kamiilos in reply toPhysAssist

Thanks PA for your comment contribution. Although I did start to have some side effects such as itchiness after shower and when sweat during exercise plus ulcers. The itchiness soothes when I stopped eating carbohydrates.

Wishing you health.

PhysAssist profile image
PhysAssist in reply tokamiilos

Hi kamiilos,

You are welcome!

To be honest, those sound more like disease-related symptoms than medication side-effects.

I started itching [aquagenic pruritus] at least a decade prior to my eventual PV diagnosis.

The symptom had progressed beyond just being after water-exposure over that time to the point where I couldn't have my shirt off for >5 minutes without getting itching, stinging, and burning over my torso and upper arms.

It still hasn't gotten much better from using Besremi, but taking approximately 1.5 grams of Beta Alanine in the AM's seems to have attenuated it pretty well- but if I don't take it every AM, the itch is back by mid-day at the latest.

Best regards,

PA

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