Starting the Ocrevus process

[kmallory1]

Yesterday my Neuro said he recommends I go on Ocrevus for my (now) primary progressive MS. I say (now) because he just changed it from Secondary progressive.
The initial paperwork included a question about family income, so the drug company can determine eligibility for financial assistance.

The washout for Tecfidera is going to be 8 weeks. He said it will probably take that long for insurance (Medicare) approval and testing. They drew about 7 or 8 vials of blood, and he mentioned a TB test.

They pre-medicate with an antihistamine and steroids, then a 2 1/2 hour infusion, and another hour of observation.
Two weeks we do the same thing, then every six months a single longer infusion.

I'm really hoping for some slowing of disability accumulation. It's been a real downhill slide for me since diagnosis 14 years ago.

[fairpace]

Had the conversation with my neuro yesterday as well. She strongly encourages me to consider it. For insurance purposes, I'm leaning toward setting this up to start at the beginning of the new year. It takes some forethought with the washout period (in my case Gilenya) and the vaccinations (basically 6 weeks post for each).

In addition to the the blood work for hepatitis and MMR, she mentioned the pneumonia and shingles vaccines. She said there is a new vaccine for shingles that is supposed to be fda approved later this year, much more effective and no 'live' virus (I think it's called Shingrix.)

It feels weird to be staring down a new medication, yet again. One point she had is keeping in perspective the washout for Ocrevus as well. When the next great thing comes along, this drug will potentially take much longer to washout. I guess that's the gamble we take. She's involved with clinical trials for Ofatumumab, however, it'll be a few years before it's ready for fda review.

Good luck with your venture. I hope this drug serves you well (and everyone else who's jumping aboard.)

[REG53]

Hi kmallory, I'm also waiting on blood results and ins approval. (medicare). He didn't say anything about TB test.

I wish you the very best.

[flangehead]

Starting Ocrevus next month

Hi kmallory1

My neuro has also recommended Ocrevus and I will be doing the blood draws today. I am also concerned about the Medicare approval, but more so about the side effects. I'm SPMS with fatigue and balance issues being the prominent symptoms at the moment. Of course it could (and does) change frequently with the cog fog rearing it's ugly head at the worst times.

Has anyone experienced the infusion and any side effects from Ocrevus? It is so new that I'm apprehensive about being an 'early adopter' for the treatment. Any feedback would be much appreciated. I haven't used any DMD since stopping the Tecfidera about a year ago.

Thanks,
Roger

[MSLazarus]

I do not think Ocrevus (Ocrelizumab) is so new...

R

Hi kmallory1

My neuro has also recommended Ocrevus and I will be doing the blood draws today. I am also concerned about the Medicare approval, but more so about the side effects. I'm SPMS with fatigue and balance issues being the prominent symptoms at the moment. Of course it could (and does) change frequently with the cog fog rearing it's ugly head at the worst times.

Has anyone experienced the infusion and any side effects from Ocrevus? It is so new that I'm apprehensive about being an 'early adopter' for the treatment. Any feedback would be much appreciated. I haven't used any DMD since stopping the Tecfidera about a year ago.

Thanks,
Roger

I have been taking rituximab for about 4 years. Someone on this board, I think, posted a great comparison between the two drugs in a lecture by Timothy Vollmer. Vollmer is a leading MS researcher. He says the two drugs are the same.

The prevailing thinking is that Ocrevus was needed because the patent on rituximab was running out. It is a matter of money. Do a Google search for articles on the difference between rituxan and Ocrevus.

Rituxan and I assume Ocrevus have fewer side effects than drugs people here have mentioned. There are few, if any, side effects. I have gotten stronger and better on it. Infusion schedule is basically the same. Good decision to give it a try. Better safety profile and good data on improvements. Good luck to everyone. And look for that talk by Vollmer.

[kymrob]

Kmallory1

Hi. I was told by my Nuro. that either you have RR MS, or SPMS. You don't go from SPMS to PPMS. If you have PPMS, it's your first Diagnosis. I know people who have been DX with PPMS, nd it was the original DX. He told me you don't go from SPMS to PPMS. I think I'd ask him about that. I also have SPMS, and my Dr. wants to put me on Ocrevus. It hasn't been studied for SPMS, but I'm going on it anyway. Slowing the progression is what we all want...right?

[rbnhd21]

PPMS or SPMS

Just returned from my MS neuro appt. Was diagnosed with PPMS 2000 . Discussed Ocrevus with dr. and he informed me that I do not have PPMS but SPMS . Had only 1 relapse back in 2011 , he claimed that was SPMS . Anyhow recent MRI showed no recent activity with brain lesions . ( have 3 ) no increase and additional . So he advised against Ocrevus . With effects of upper respiratory infections and brain infections , he saw no reason to take the chance . I hope that all of you that are starting it have the success you are praying for .

[pennstater]

Hi. I was told by my Nuro. that either you have RR MS, or SPMS. You don't go from SPMS to PPMS. If you have PPMS, it's your first Diagnosis. I know people who have been DX with PPMS, nd it was the original DX. He told me you don't go from SPMS to PPMS. I think I'd ask him about that. I also have SPMS, and my Dr. wants to put me on Ocrevus. It hasn't been studied for SPMS, but I'm going on it anyway. Slowing the progression is what we all want...right?

You are right that you don't progress from SPMS to PPMS. Some doctors will change it if they feel your history supports it. Other docs may have held off on putting the PPMS label on since there were no meds to treat and insurance won't cover off label usage.

[palmtree]

Hi. I was told by my Nuro. that either you have RR MS, or SPMS. You don't go from SPMS to PPMS. If you have PPMS, it's your first Diagnosis. I know people who have been DX with PPMS, nd it was the original DX. He told me you don't go from SPMS to PPMS. I think I'd ask him about that. I also have SPMS, and my Dr. wants to put me on Ocrevus. It hasn't been studied for SPMS, but I'm going on it anyway. Slowing the progression is what we all want...right?

It's all about insurance. Now that we have something to treat PPMS the distinction really doesn't matter. Slowing the progression is all we want! (Except maybe a cure and an ability to reverse the damage)

[pb909]

My neuro had me originally as PPMS and after some relapses now SPMS. This has been helpful in part due to insurance approving treatments.

[kmallory1]

Kymrob,
My SPMS did not "turn into" PPMS. My diagnosis changed because we have to play the game by the insurance companies' rules.

[ClaudiaC]

Did your Neurologist have to change your diagnosis?

KMallory,

Did you have to have your diagnosis changed to PPMS so your insurance would cover it? My insurance says it won't cover Ocrevus because I am SPMS. If so, did it help with your insurance?

Thanks!

[ClaudiaC]

To Fairpace: Shingles vaccine

I think you can be tested to see if you have any immunity from childhood before getting a Shingles vaccine. I had the chicken pox vaccine (not chicken pox) 10 years ago and the Shingles vaccine was likened to a booster shot for the people who had chicken pox as a child. Hope this helps.

[kmallory1]

ClaudiaC,

I am still waiting on approval from Medicare and insurance. Haven't heard anything yet, and it's been 4 weeks. I'm halfway through the 8 week washout on Tecfidera.

I've been seeing the same neurologist since I was diagnosed 14 years ago. He says it's all the same disease, so he's not hung up on labeling me SPMS or PPMS. We reviewed my history, and the two episodes that he had characterized as possible relapses probably weren't. (Vertigo for several weeks and sudden hand weakness which turned out to be permanent.)

I've gone from foot drop using a brace and cane to a rehab power chair and limited dexterity.

If Ocrevus works to slow disability progression it shouldn't matter if it's Primary or Secondary.

[brave]

Just received second infusion of first treatment

Hi kmallory1

My neuro has also recommended Ocrevus and I will be doing the blood draws today. I am also concerned about the Medicare approval, but more so about the side effects. I'm SPMS with fatigue and balance issues being the prominent symptoms at the moment. Of course it could (and does) change frequently with the cog fog rearing it's ugly head at the worst times.

Has anyone experienced the infusion and any side effects from Ocrevus? It is so new that I'm apprehensive about being an 'early adopter' for the treatment. Any feedback would be much appreciated. I haven't used any DMD since stopping the Tecfidera about a year ago.

Thanks,
Roger

Hi Roger
I received first infusion 2 weeks ago and second one yesterday
I haven't experienced any side effects

Infusion went smoothly too
I was given Benadryl and Antihistamine right before
Infusion , that knocked me down for entire period of infusion . I was so weak and motionless bcs of that cocktail

Good luck