Trouble getting interferon?

[Owl-fan]

I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia.

We have talked about trying interferon, but my Dr is convinced that it is extremely hard if not impossible to get the drug right now. Has anyone else experienced a problem getting your hands on interferon? I live in North Idaho, so I'm not sure if our remoteness is part of the problem.

[hunter5582]

There is no shortage of the interferons that I am aware of in the USA. I have no problem at all obtaining Besremi. When I was on Pegasys, there was not problem getting it from a number of specialty pharmacies.

The issue that can be a problem is getting one of the IFNs authorized by insurance. There is a similar issue with Jakafi. Besremi and Jakafi are both high-tier medications due to their expense (roughly $14K-15K/month). Pegasys is less expensive ($4,200/month). All of these medications require prior authorization and are often denied at first request, The doctor will have to appeal. You may also have to file your own appeal.

Hope you access the medication of your choice ASAP.

[Orangeboykitty]

You might want to check with your care team about trying anagrelide, either alone or possibly with another med, because all it does is lower platelets. I took it a number of years ago because I had to lower my platelets quickly to have hip replacement surgery. I was on it for awhile but had to switch because hematocrit was getting higher.

[Mishie14]

I have been on peginterferon since March. I’m in mid Michigan. No issues getting it here during the last 7 months. I get it from our hospital pharmacy, not a drug store though not aware that should make any difference in availability. I did reach out to my Medicare insurance provider at the start to confirm coverage. It’s quite a bit more expensive compared to the pill form drugs. The side effects are so much less though the results are slower in coming. I am very happy to be going down this path of treatment for ET JAK2. Hoping availability for you gets straightened out so you can try it, too . Stay safe!

[Island-Lady]

I am in Hawaii and had no trouble getting Pegasys interferon after stopping hydroxy urea due to negative side effects. It is definitely worth it to have your doctor try to put it through, and if it doesn’t go through the first time as others have suggested, he can submit it again. I wish you the very best.

[monarch5000]

There is absolutely no problem getting both of the available brands of interferon in the USA: 1) Pegasys and 2) Besremi. Both are shipped overnight via FedEx. Join the "MPN interferon" on Facebook for up to date information.

If I were in your shoes I'd confront your doctor with the following: here's a study that shows that for the past 10 years you've been putting me on a path towards post PV myelofibrosis by prescribing hydroxyurea instead of interferon: tinyurl.com/544sybph And point out that all of the info. below about interferon was known way back in 2011:

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[ainslie]

One thing to bear in mind with starting Jakafi is it’s common for platelets to rise more for a few months before starting to drop. When I started Jakafi/Rux for PV my platelets rose from around 600 to 760 and it took about 6 weeks for them to start falling, they are now 198. So there can be a time lag.