COVID and Besremi : Dear all,I have just got a... - MPN Voice

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COVID and Besremi

Dane12 profile image
10 Replies

Dear all,I have just got a COVID infection from a trip in US (symptoms showed last Friday). I started getting better (no more fever), so I hope that in few days will clear out.

I am scheduled for my next Besremi dose this Friday. Does anyone has experience on how far apart should be Besremi administered from the moment of infection with COVID?

Also, anyone has experience if one of the Besremi dose is skipped?

As a comment, I am tolerating Besremi very well (250 micrograms), never having any symptoms after administration. I am CHR, with only lymphocytes hoovering above lower limit (1).

Thank you in advance for your answers.

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Dane12
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Spanelmad profile image
Spanelmad

I think you need to contact your Heamtology team to ask these questions.

Dane12 profile image
Dane12 in reply toSpanelmad

Thank you for your advice!

Pogm profile image
Pogm

It is best to ask your MPN team or whomever is on top of your care. Being your own patient advocate is so important. I take Besremi and a small dose of Jakafi(5mg 2x a day) to control itching . This coming Monday I will be having a hip replacement. My orthopedic surgeon wanted me to stop the Jakafi, fearing it would raise the likelihood of infection. I immediately contacted my MPN to have their input. I had read that stopping Jakafi abruptly could bring on rebound symptoms. With good speed my MPN doctor sent a letter to the orthopedic surgeon stating I could remain on the Jakafi since my WBCs and neutrophils are in normal range and stopping abruptly can produce unwanted side effects. So, always get medical advice when deciding on something as important as dosing, etc. Glad you are feeling better!

Dane12 profile image
Dane12 in reply toPogm

Thank you for your advice!

EPguy profile image
EPguy in reply toPogm

You're one of not too many taking the combo therapy IFN+ Rux. It's supposed to be a good mix. What is your IFN dose?

Pogm profile image
Pogm

I am currently on 75mcg of Besremi. I titrated up to 100mcg 6 months ago and had some pretty bad side effects . At 75mcg I have tolerated Besremi fairly well. As of July 12th I will have been on Besremi for 1 year. My platelets still hover in the mid 600's and once dipped to 584. I have only had 2 phlebotomies since Nov '23. I'm willing to take the "go slow" approach and hopefully Jakafi will help with my numbers. I've been on Jakafi over 2 months now.

EPguy profile image
EPguy in reply toPogm

What effects did you have other than itching?

Pogm profile image
Pogm in reply toEPguy

When I started Besremi at 50mcg I was doing very well. My MPN specialist recommended titrating up to 100mcg. That's when the problems began: increased urination, worsening hypertension and severe headaches. I went back to 50 mcg and then up to 75mcg, which I am at now. Nothing worked for the itching, so Jakafi was added. My allele burden, as of Jan'23 was 94%. That is why I feel it is important that I remain on cytoreductive therapy. I am grateful that 75% of my itching has resolved. I am going in for a hip replacement this Monday and will remain on Jakafi during and after surgery. The journey continues!

EPguy profile image
EPguy in reply toPogm

In some ways it's good your body gave such a clear message. You and your Dr now know your right IFN dose.

With the combo, you're doing the best option for better odds to get that allele burden down.

Wishing you a successful and routine surgery.

Pogm profile image
Pogm in reply toEPguy

thank you so much!

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