1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

Polycythemia Vera and Interefon patients?

Posted , 4 users are following.

bill71415
bill71415

I saw a specialist at the MPN center of the Weill-Cornell medical center yesterday, and she is recommending Interferon. I would like some information from anyone with Polycythemia Vera who has been treated with Interferon, and your experinces with it, good or bad _ i believe she said it is a once-a-week injection. Meanwhile she upped my Hydrea (500 mg -> 1000 mg/day) while I consider my options. I am returning to see her in about a month.

Thank you,

Bill

0 likes, 18 replies

18 Replies

  • peter98873
    peter98873 bill71415

    Posted

    Hi Bill,

    There was one previous patient contributing to this site who was taking interferon and quite frankly, was unable to get on with it after suffering some strong side-effects.   You should be able to find this contribution as it was posted about 2 months ago.

    I have never taken interferon so cannot comment on this drugs use.  As far as your Hydroxycarbamide (Urea) is concerned do watch for an increase in side-effects after a while which can become troublesome, as I well know but I was on a higher dosage

    than your new recommendation.  It may be you will see little difference but be aware of any unusual effects you have not previoiusly suffered.   Keep fit.

    Peter.

     

    • bill71415
      bill71415 peter98873

      Posted

      Thanks for the information, Peter. I will search for the Interferon post. The only thing I noticed from Hydroxyurea so far is a slight light-headedness but I will watch for additional symptoms with the increased dosage.

      Best regards,

      Bill

  • Zapamania
    Zapamania bill71415

    Posted

    Hi Bill I'm glad you went to Cornell.  I have a feeling I'm not far behind you.  Tried to pm you don't know if you got it.  I'm soo curious about Dr. Richie.  I knew they would suggest Pegasys there.  There's people who love it and say it's a game changer and of course there's people who can't tolerate it. I don't think it's as expensive as Jakafi.  From what I know it comes pre-filled in a syringe 180 mcg.  If your dosage is 45 mcg, then you draw 1/4. I know it has to be refrigerated.  It was originally used to eradicate hep c, but at a much higher dose.  The most I hear is flu like synptoms for 2-3 days after injection unti your body gets used to it.  I wish you luck.  Zap

    • bill71415
      bill71415 Zapamania

      Posted

      Hi Zap, I was very pleased with Dr. Ritchie, as she was very knowledgable about the disease and treatment options. I did some research and it appears that Interferon is not as expensive as Jakafi but still pretty expensive - I will have to see if my insurance will cover it or not. Either way I don't think its cost-prohibitive, but we'll see.  The Dr spent over an hour with me, with her assistant also spending some time and coming in and out. After her increase in my Hhydrea dose (500 mg to 1000) she ordered me to get blood work done next Wednesday so we'll see what that shows. I will let you know about the results, and if I decide to start on Interferon. I will check out the PolyCy Facebook page for more information. I found one person on this forum who did not tolerate it and had depression issues, which is possible with that treatment.

      Thanks and best regards,

      Bill

      Bill

    • Zapamania
      Zapamania bill71415

      Posted

      Hi Bill thanks for letting me know about Cornell & Dr Richie.  I'm on 15 mg of Jakafi now and I'm starting to wonder if it's for me.  I'm having a lot of gastric problems.  If you do get on Facebook, check out Paul Cheribini and Jill Zatichick.  They are the peg experts.  Yea, I've heard about depression from peg, I'm depressed enough from this whole mess already, that's all I need.  Keep us informed. That's me and Peter98873.  Good luck. Zap

    • Zapamania
      Zapamania bill71415

      Posted

      Hi Bill, did you have to send all your records including your bmb slides prior to your visit @ Cornell.  I was in the process of doing that this past winter then I got discouraged by the cold weather and Trump becoming president and all the blocking of so many streets around Trump Tower that I gave up. Zap
    • bill71415
      bill71415 Zapamania

      Posted

      Hi Zap, yes, they requested medical records from my current hemotologist and the slides from my bmb. Joy at their office was kind enough to call me and let me know when she received them so I wasn't waiting and wondering! I took a train into Penn and then a cab up to the Starr Pavilion on E 70th out near the East River, no real problems. I suppose you could take an Uber instead. Tomorrow I go locally for blood work and then back to see Dr. Ritchie in a few weeks.There are other doctors at that practice that look well-versed in MPNs and PV in particular, if you can't get an appointment with Ritchie - but I found her easier to get an appointment with than some of my local doctors!

      Best wishes and keep me posted, I will do the same.

      Bill

    • Zapamania
      Zapamania bill71415

      Posted

      Hi Bill thanks for the info.  I would take a DeCamp bus into the city, which would leave me at Port of Authority.  Then a cab, same as you.  I only know of Drs Richie and Samuel at Cornell, and of course Dr. Richard Silver.  I watch a lot of his videos on YouTube.  He is a genius and I believe still head of the MPN division @ Cornell.  Not sure cause he's 88.  I'm going to my MPN dr. In Jersey 1 more time.  If my results aren't good on Jakafi, I'm making an appt. in NY. Did you find the fb group?  Please let me know how things went after your visit.  Good luck. Zap

    • bill71415
      bill71415 Zapamania

      Posted

      Yes, the MPN center there is the Richard Silver MPN Center, looks like he still takes patients but accepts limited insurance, which limits the number of new patients he sees. Thanks for reminding me about the FB PV group, just sent a join request!

      Bill

    • Zapamania
      Zapamania bill71415

      Posted

      Hi, Dr. Silver @ Cornell and Dr. Mesa, I think in Arizona, are the 2 biggest names in MPNs.  Once you get on the fb, pay close attention to Jill Zaitchick, who lives in NJ and sees Dr. Silver Or Richie, she's on Pegasys and really knows her stuff.  The other wizard on the line is Paul Chrubini.  I tnk he's west coast, also on Pegasys. They answer a lot and know so much about MPNs.  You'll learn so much.  Take care. Zap

    • bill71415
      bill71415 Zapamania

      Posted

      Thanks Zap, yes, in my research i cam across the Arizona doctor's videos and was even considering flying out there if I had to, but luckily found a more local option! (I think it was you that first mentioned Weil-Cornell - thanks!). And as you predicted, Jill sent me a PM all about her positivie experience on Pegasys - so we'll see. I will share my decision and results if I go down that path.

      Best regards,

      Bill

    • Zapamania
      Zapamania bill71415

      Posted

      Hi Bill  yes it was me who told you about Cornell.  I told you Jill would come forward, she's super pro Pegasys as is Paul Cherubini You'll get to know them. Glad you got on the site.  I notice people fly all over the country to MD Anderson in Texas, Cornell, and the Mayo Clinic for help with this mysterious disease. Keep us informed as to what you're going  to do. Zap 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.