PV with MS

[KLCTJC]

Well….started having double vision. Went to the hospital. No phlebotomy needed other numbers are not any different. I am still waiting to get Besremi. Insurance is still not wanting to cover it. I had a MRI and found out I have MS too. I know both can be treated with intferon. Anyone out there by any chance have both and have an idea if they can be treated with the same drug. Thanks

[katiewalsh]

Hi Unfortunately I can’t help with your question. But I want to encourage you to be sure you have experts in MPN’S & MS taking care of you & that they agree to communicate with each other & coordinate your care. The only bit of information I have that might be helpful is about Cooling Vests by ThermApparrel , a company used by MS patients to be able to regulate your temperature in warm weather. Feel free to message me if you want info on them. Good luck with everything. Katie

[hunter5582]

Sorry to hear about the struggles with insurance and yet another diagnosis.

I am afraid I do not know much about MS. I think that it is Interferon beta that i used to treat MS. It is Interferon alpha (in PEGylated formulations) that is being used for MPNs. I do not know the implications of an Interferon alpha like Besremi for MS. As katoewealsh suggests, that is something to review with MPN and MS Specialists who are working as an integrated part of your care team.

Regarding your insurance approving Besremi - do not give up. I had to do extensive research and follow up with my issuance company. It took 14 hours worth of phone calls and filing my own appeal to succeed. If you have not already done this, call the insurance company and get a copy of the plan rules. This is the logarithm that they will use to make a determination. It is very important to understand this in order to file an appeal.

Meanwhile, it is worth considering Pegasys. I started on PEG and did fine on it. I really have not seen any difference between PEG and Besremi in my case. A few people on the forum have reported tolerating PEG better. It is an option worth considering.

Wishing you success moving forward.

[KLCTJC in reply to hunter5582]

I really am considering it. My local oncologist just doesn’t like it, but after this new diagnosis they may change their mind. PEG used to be used to treat MS. Hence, my thoughts on the overlap. But their are so many MS drugs. I don’t think they will have an issue finding one I can take along with Besremi. Just really stinks dealing with both of these diseases

[hunter5582]

It is unfortunate that some docs still "don't like" the interferons. I expect this is sometimes due to previous experience with the older forms of interferon. My own experience with Besremi (and Pegasys) has been very positive. Definitely the best treatment option I have used.

Wishing you multiple levels of success.

[KLCTJC]

Thank you so much!!! I am hoping my doctors can put their heads together on this odd case! But grateful both are treatable. I am a mom and need to be here for my family. You have made me feel better about starting an interferon!

[Peetzil]

Hi sorry to hear about your dual diagnosis, sounds like you had an episode of optic neuritis which led you to the ER. I have MS diagnosed in 2017, and as yet undiagnosed (but being investigated) high Hb & Haematocrit. My MS & MRI’s has been stable, so my neurologist has not advised commencing medication yet. I’ve found professor Gavin Giovannoni’s info really useful, he has a podcast & weekly newsletter covering all aspects of MS called Prof G's MS-Selfie. He is a proponent of early treatment & preserving function. There is a video where he covers medications for MS you might find helpful.

Best of luck with it all.

Lynn

[KLCTJC in reply to Peetzil]

Thank you! Just knowing I may not be alone makes me feel better. I am hoping their may be a cross over treatment. Or maybe like you maybe the neurologist will just want to watch it. I have no other symptoms of MS and overall feel great besides anxiety!!! Thank you for reaching out

[Peetzil]

I know that feeling well! I too feel great and the MS hasn’t really impacted my life so 🤞🏻That continues. It’s always good to know you’re not alone & this forum is fab I’ve certainly found it very supportive 🥰

All the best, keep us posted how it goes.

Lynn