I'm new here

[mojpes]

Hello. I'm new here. I have PRV diagnoses from 2016, but I had for more than 10 years.

I haven't have any drugs yet, but I could recive now Besremi. A have PB every two months.

What are your opinons? (I'm not english)

[hunter5582]

Hello and welcome to the forum.

I have PV and have tried several different treatment options. I was hydroxuturea-intolerant and it was ineffective for me. I tried phlebotomy-only for a while but the iron-deficiency symptoms were worse than the PV symptoms. I started on Pegasys then switched to Besremi when it became available. These interferons have been much more effective for me and much easier to tolerate than the other options.

We are all different in how we respond to the treatment options for PV. None of us can predict how you would respond to Besremi. There is good support for efficacy in the research and it is the drug that appears to be disease modifying. That is why many of us with PV are opting for it.

Suggest you have a conversation with your care team about Besremi and the other treatment options. Compare the risks and benefits of each choice. Then you can make a good choice for yourself.

Vse najboljše tudi tebi

[cvita71]

Hi neighbor, welcome to this forum.

I'm from Zagreb, Croatia. I too was diagnosed in 2016. with PV, since then I'm on phlebotomy and Hidroksiurea, this year I started with Pagasys interferon since Besremi is not available in Croatia. I can only get it if the hospital will pay for it, but they don't want to. I found the company which can distribute it here, but no luck concerning the payment.

I have an e-mail contact for a distributor in Slovenija, Aoporphan for Besremi if you need it.

[Wyebird]

welcome. I have ET so I’ll let others advise you. Glad you found this forum

[GardNerd]

I would echo what Hunter said above. I was doing phlebotomies only for 15 years (since diagnosis) and am now on Besremi. I’ve been tolerating it well, and it’s starting to make a positive difference with my numbers. I wish I had started an interferon sooner in an effort to stop disease progression. I felt pretty well on the phlebotomies, but the disease was progressing “invisibly” all those years. Good luck to you!

[Planti]

Hi and welcome to this useful forum. Hunter's comments are always very appropriate.

One thing about the interferons (Pegasys and Besremi) is that they seem to have fewer side effects if one starts on low dose and increases slowly.

I have ET and am on Pegasys and it has worked well with some side effects. Everyone is different.

Best wishes to you.

[Barbiebreath]

I am on Besremi and all of my numbers (except liver function) are normal now! I’ve been on it for almost 5 months. My liver function is a little high and my doctors are keeping an eye on it. The last blood draw I had it had not lowered but it had not increased. We still considered that a win! Good luck no matter what you decide. 😃

[MAP44]

Welcome to our amazing group. Loads of love and support here. ❤️