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
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.
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
Here is a link to some history of my condition on this forum:
https://patient.info/forums/discuss/pv-meds-question-593920
Labs usually show hematocrit >45 or hemoglobin > 16 which is the hemotologists threshold for a phlebotomy. Most of the time had one every 2 months or so but pain in my foot as mentioned in my linked post has caused me to seek out additional information from an expert as my current hemotologist didn't think it was a related condition - but clearly is it related. Have only been on 500mg Hydrea for ~ a month and my numbers yesterday were decent at Hgb 13.7 Hct 44.1 platelets 580. Note that I just had a phlebotomy last Friday which I'm sure is why they are down, time will tell if the Hydrea is helping.
Bill
Forgot to mention, she was concerned that my white blood cell count (WBC) was also high - 15.6,and said my iron was very low (not surprisingly).
Dr Peter, I've had this condition for over 5 years so of course I'm on low-dose aspirin from the start, but now that I'm having other physical problems we are assessing whether I need additional or different meds, as is typical. The condition has been managed succesfully for over 5 years with aspirin and periodic phlebotomies but things have changed and new symptoms have arisen. I am in otherwise good health and weight, a runner for 30 years until the recent pain made that impossible. I am hoping to go back to running soon if the pain is gone. I find this forum to be the best place for information on this rare disease from others who have it, which is why I'm asking specifically about people's experience with Interferon as I weigh the risks and potential benefits.
Thanks,
Bill
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
Hello Bill
I just want to clarify that the recent contributions by a Dr Peter have no connections with me whatsoever. He is as I see it a new contributor from Poland. I claim no medical qualifications but was first diagnosed with PV at least 15 years ago and was subject to symptoms prior to this, without realising what they were indicating. Keep well.
Peter.
Hi Peter, I understand that "Dr Peter" is not you, I could tell by his way of writing. You have been very helpful and informative, and I see that maybe since Dr. Peter is from Poland there is a language issue.
Best regards,
Bill
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
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
Hi Bill,
Thanks for your message. I consider you to be a very perceptive person and it did not surprise me that you had quickly worked things out. From what Dr Peter has suggested I wonder if he is not into alternative therapies and medicine. Certainly the language difference could prove an issue but I do feel that if he knew a little more about his PV he may have different sdvice. We all know how serious a problem PV etc is and it is only recently that the medics we know have become more able to treat patients, and none of them I know would recommend anything other than the current treatments available. Who knows, it just might be a change of direction. Anyway Bill, pleased you found the posting I referred to, it is one of the best I have come across where interferon is concerned. I know Zapamania has contacted you and she seems to be quite clued up on the U.S. scene whilst she also admits to a huge interest in the goings-on of the medical practices there. Hope you get your tribulations settled soon. Best wishes.
Peter.
Peter.
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
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
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
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
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
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
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