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April 27, 2024
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Answer Summary

Members discussed whether Ocrevus infusions could happen more often than every 6 months, with many sharing frustration over the 'crap gap,' a... Read more

Members discussed whether Ocrevus infusions could happen more often than every 6 months, with many sharing frustration over the 'crap gap,' a period of worsening symptoms felt weeks before the next infusion is due. Several members explored switching to alternatives like Kesimpta or Briumvi, while others noted that some neurologists can make a case to insurers for a 5-month schedule, though Medicare and most insurance companies rarely approve it. A recurring theme was balancing the pursuit of better treatment with focusing on relationships, gratitude, and quality of life while living with MS.

A MyMSTeam Member

Many of these drugs started out for use for other diseases, and are now touted as a MS miracle drug. Some were specific too MS from the start. Some drugs work well for some of us, and for others are a walk through a living nightmare. I was on max dose on all my MS medications, and took tysabri till i became JC virus positive..
I only found out I was JCV positive, two days before my next infusion, which could have been much worse then MS. (PML)
looking back, I can honestly say, some of the meds were making things worse. More pain, more frequent attacks, mood swings, and a host of other issues.
They still don't even know what causes MS, and are we to trust these drug companies, like they have all the answers? they don't have the most important answer of all, what is the cause of MS? In many cases, we are just glorified guinea pigs. We should be focused on the important things, family, friends, and living well while we still can. I hate to rain on many of your parade, but unrealistic expectations can rob us of the tangible beauty we still have right in our grasp, while waiting around for a cure that may never come in our lifetime.
LIVE, LAUGH AND LOVE, with all you're might!
too me, that's the best medicine of all.
Good luck MS warriors.

April 28, 2024
A MyMSTeam Member

Ocrevus is made to be infused into the system every 6 months..drug companies and insurance have no say over this.. having taken the first two and third infusion, I realize this drug is not going to make me feel better.. nor anyone else.. it is to slow down the progression of the illness.. if you have side effects from this illness, talk to your doctor about getting that treated..

April 29, 2024
A MyMSTeam Member

@A MyMSTeam Member, as someone who worked in medical affairs for multiple MS drug companies I need to correct a few things you are incorrect about. 1) Everyone sees big pharma as the evil entity. The 30 different drugs that are out there used to treat MS wouldn't be possible without them. Sure, they all want to make money. Sadly the capitalist society we all live in, that is the name of the game. It is not to take care of the patient but to make the best therapy that the most people want that makes the most money. A cure would make them rich, and they would charge millions for each dose as they have for SMA or now sickle cell anemia. Whoever comes up with the cure wins the MS game, they make billions and drive all others out of business.
2) The common cold has a known cause, why no cure? Because its not as easy as you believe as things mutate, change and adapt.
3) The cause of MS is unknown. Is MS a single disease or multiple diseases all lumped into a common etiology? EX. NMOSD used to be called severe MS until about 10 years ago until they discovered the AQP4 water channel on astrocytes at Mayo Clinic (which I was part of) and guess what, it is no longer severe MS but NMOSD. Why is everyone's MS so different, progress different, is RRMS, PPMS or SPMS? could these all be very different diseases that all result in disability? Time will tell and there are 1000s working on this question daily, but don't think you have the answer because even they don't yet. EBV had come out as a likely cause but even that only accounts for some cases and yet they are working diligently on a vaccine for it to prevent MS. Who is working on it, the drug companies.

April 28, 2024 (edited)
A MyMSTeam Member

I am considering asking about Kesimpta due to the horrible crap gap I get 5 weeks before the next Ocrevus infusion.

April 27, 2024
A MyMSTeam Member

Ocrevus is every 6 months. I have not had any side effects but like you I wish I could get infusion every 4-5 months. I’m okay up until middle of 4 th month and I began to have more fatigue, start stumbling more and spasms in left leg. I spoke with Neurologist and he tried to get it approved by Medicare and they would not do it. Insurance companies are driven by Medicare policies and that why you can’t get approval. I have to be really careful before next infusion coming in July. The progression has slowed down. I’m grateful for that. Stay safe and strong.

April 30, 2024

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