I Want Ocrevus!

I Want Ocrevus!

 

What do you do?
What do you do?

 

We have been hearing about this new MS medication in the works for several years.

And finally this week, the FDA granted approval for Ocrevus (short for ocrelizumab).

Now what?

All the high-fives surround Ocrevus because it is the first & only approved treatment for progressive forms of multiple sclerosis.

 

(That’s my kind of MS–Yippee!)

And I am giving it serious consideration.  

Here’s why…

 

I was baptized into the world of MS after my 1st plunge into an MRI in September of 1996.

Several years of Avonex followed…as well as a downward progression.

A switch to Copaxone yielded much the same results.

Rebif too, thus our relationship soured and we parted ways in 2009.

Not exactly beaming confidence.
Not exactly beaming confidence.

 

So for eight years I have been treatment free.

Have I progressed?  Oh you bet.  (In 2009, my 25ft timed walk was nine seconds.  Today it is a glacerial 18 seconds).

Was it smart to go treatment free?  Who knows.

My MS was progressing on meds as it has while off them.

 

Which brings me back to Ocrevus.

Should I?  Will you?

 

My doctor says she has a list of 60-70 patients who could benefit with Ocrevus (myself included).

And she is one of about 15-20 doctors at this MS clinic!  So I think of the many docs & MS clinics around the world…and how many MSers will be clamouring to be put on the business end of an Ocrevus infusion.

Oh the humanity!
Oh the humanity!

 

I envision riots.

Overturned scooters.

Burning alcohol swabs.

How will MS clinics bear the demand for Ocrevus?

Sorry, I do apologize as I get carried away sometimes.

 

Seriously though, I am thinking long & hard about saying yes.

Even my son says “Why wouldn’t you?”

It’s just difficult to admit defeat…believing I can beat MS with a healthy lifestyle only.  

I recall those many days following Avonex shots feeling like sh**, thinking how I am wasting precious time and energy being dozy, achy & lethargic.

I can’t stand side-effects, which is good news for Ocrevus as it is reported to have very few.

 

Lightning in a bottle, I hope.
Lightning in a bottle, I hope.

 

My doctor (and maybe yours too) has been quick to remind me this isn’t a cure.  And Ocrevus doesn’t replace myelin.

On all counts though, things look promising.

Maybe Ocrevus is the “game-changer” MS researchers have long talked about.

What are your thoughts?

Are you happy with your current DMT?

Will you be considering Ocrevus?  Have any doubts?

It can be a big deal switching meds…or in my case, going back on meds.

Whatever you choose, you must believe.  Giving it time & 100 percent.

It’s all we can do.  Decisions await.

Keep moving, my friend.

sock

 

9 Replies to “I Want Ocrevus!”

  1. I’m a little more cautious. It’s still considered an immunosuppressive medication. Makes me think of my doctor’s discussion about PML…especially being JCV positive and prior chemo treatment. Just something to consider…but yes it’s on my doc’s list for considering in a year to allow flush of my previous treatment.

  2. I am definitely going to try it. It is my last option, unless something newer becomes available. After being on Copaxsone for 6 years with no problem, had a major exacerbation and became 50% paralyzed. Dr. switched me to Tysabri and after 8 years I am 75% paralyzed. Been following the pending FDA journey of “Ocrevus” since first learning about this medication. Even had 3/27 marked on my calendar (FYI not the 1st pending FDA approval date). In retrospect, I wonder if I made a mistake by not going “DMT free”. I had even discussed with my Dr. my fear of becoming a paraplegic. When I spoke with my Dr. this past week, I discussed the possibility of stopping Tysabri to flush it out of my system to prepare for the Ocrevus. He said staying on Tysabri is still the best DMT for me. He also said Ocrevus would not be available for probably 3 months due to insurance company approval, drug availability in the infusion centers, and nurse’s training. I can’t consider changing neurologists. I started out, and was diagnosed in the 1990s, at the “Mayo Clinic”. Between the Mayo Clinic, and the “Comprehensive MS Clinic” where I go now, it is a known fact in the medical and MS community, that I have seen the best MS neurologists in Jacksonville. Considered going to South America and seeing a Witch Doctor, but instead I guess I will wait it out for Ocrevus, and hope to retain what little independence I have left.

  3. Margaret,
    Thank you for sharing your side. I believe “fear” drives us to medicate. I am afraid every single day–wondering if I’m doing the right thing.
    Often wish we could clone ourselves to see if one would do better than the other.

    Dave,
    Thank you for checking in. It seems everything has side effects of some sort. That’s why an ad for a medication is 1 page while the disclaimer is 2. Makes no sense!

    Mal,
    Welcome to My Odd Sock! Your membership card is in the mail.

    Tina,
    Thanks for your agreement. Appreciate your words!

  4. Yes go for it, I think the odds are on your side. I am a big believer in meds since I was around in 1980 with no meds….rest, rest, rest was all. I know they have come a long way with all diseases it seems. I know a guy who was born with aids from his mother, she died long time ago but he is 27 now. Be a believer 😀

  5. Kim,
    Thank you for your words of support. I waver back & forth every day. Always good to hear from someone who has been there!
    Keep moving!

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