85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower limit, and the short leash Pharma holds with a 30 day supply limit.)
Interested in hearing from Jakafi users, pro or con, anyone who has successfully treated the ulcers allowing them to stay on Urea. Just ran across a treatment using Promogran--anyone used it? Many thanks.
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veryoldman
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Hi veryoldman, sorry to hear of your ulcer, they aren't nice. I haven't had them and I am not a medico, but my brother, who also has PV, has had 2. My understanding from his experience is that your doc is right - once you have them, you have 100% chance of reoccurrence if you stay on HU; and it's unlikely it will fully heal while you stay on HU. My brother's first ulcer took 6 months to heal (after eventually stopping HU) and he still has a major scar. He then went back on HU and lo and behold, about 2 years later, another ulcer. So that's the first thing to sort out - from my understanding, I don't think you will be able to continue HU. It's due to the way it acts on your cells.
I don't know enough about ET to make another suggestion. My brother went on to Pegasys. But at 85, I'm not sure if they will recommend that for you, though other mature patients on here have taken it with success (but you need to inject it). There is probably good information on the MPN Voice website. Many on this site like Jakafi, though I have no experience to draw on. Every medicine has its pros and cons. For ET you have other choices, so if I were you I wouldn't risk more HU, and I hope the ulcer heals soon.
I hope someone on here (and your doctor) can help with more specific information for you. Best wishes.
Had a foot ulcer on Hydroxy so bad I was hospitalised. Changed to Anagralide and hopefully everything is OK now. Have to say the ulcer was the most painful experience I have ever endured.
Yes, I understand. The pain has been unrelenting and at a very high level. But! went to the wound doctor yesterday and she suggested I take one Advile and one Tylenol together about every six hours. Almost no pain beginning shortly after the first dose. First good sleep in about two months.
This kind of ulcer is an absolute contraindication for HU. Many find the ulcer will not heal while still on HU. The wound is at risk for turning gangrenous.
Do bear in mind the HU does in fact decrease RBCs too. It decreases all hematopoiesis. There may be not any differentce in RBCs between HU and Jakafi ergarding RBCs. You do also have the option to switch to Pegasys , which is the other first-line treatment option for ET. This would also affects RBCs.
I am wondering if your doc discussed anagrelide with you. This is considered a second-line option, but it is more platelet specific in how it works. There is also a clinical trial underway for a new drug called Bomedistat. you may want to look at that option as well.
I’ve been on Jakafi about five years for pv. My problem was HU didn’t control the terrible itching. Copay was $20 with private insurance. Now on Medicare it’s in the thousands. I still have a hoard of Jakafi so haven’t had to order it thru Medicare yet. I’ve had anemia from Jakafi but otherwise it’s great.
I had ulcers after 3 years on hydroxy, they wouldn’t heal despite many different treatments, until I was changed on to Anagrelide. Hope all goes well for you.
I was on hydroxyurea for about 5 yrs. for ET then transitioned to Post MF and started on Jakafi. The only thing that has happened with the jakafi is lowering the dose from 20 mg twice a day to 15 as my platelets were getting too low. So jakafi has been a good thing for me. All the best as you continue on this journey.
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