Jury still out on Ocrevus

The new MS treatment Ocrevus is showing a dramatic reduction in active relapses. But what about the rest of us?

OcrevusLast year my neurologist excitedly told me that a new drug was due to be approved by the FDA in early 2017. So this year, Ocrevus was introduced to the market and I began to read glowing accounts by healthcare providers of how dramatically it cut relapse rates in RRMS, SPMS with active relapse activity, and even PPMS.

The treatment, which depletes a certain type of B-cell, is a close relative of the cancer drug Rituxan (rituximab), but developed from human tissue instead of mouse. Opinions seem to be that it works really well on versions of the disease with active relapses.

What About Me?
That sounds great! I mean, yay, right? But what about SPMSers in the progressive phase of the disease who no longer experience relapses? Like me. It turns out "(w)hether secondary-progressive patients without relapses would benefit from the treatment has not been studied."

Has not been studied?? I hope that instead means there is not yet an immediate way, like relapse rate, by which to gauge positive results in this type of disease. That it will take longer to see changes in disability progression or a slowing of brain shrinkage, for example. I. mean. please.

Safety Issues
Then there are the reports about an odd smattering of breast cancer in the treated group of the clinical trial not replicated in the placebo group which could just be a weird coincidence. Scientists are hoping a larger pool of users will prove it was in fact unrelated.

Also, an MSer taking Ocrevus did recently develop the rare brain infection PML (multifocal leukoencephalopathy). But since he was coming off 3 previous years on Tysabri, one of the MS treatments [along with Gilenya (fingolimod), and Tecfidera (dimethyl fumarate)] linked to PML, the incident was reported as due to Tysabri. Genentech/Roche is currently investigating.

This underscores the necessity of standardizing the advice neurologists give patients on managing a transition to Ocrevus from other treatments. This might require more research as "a switch in treatments was (apparently) not evaluated in the trials."

It sounds to me like still more time and research is needed.

Related links

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A tale of two (MS) pathologies

A friend recently forwarded me an article from the Inside Stanford Medicine newsletter. It seems that a small, recent study showed that there may be two different schemas for MS. 

So MSers’ responsiveness to the available therapies, and interferons in particular, might depend on which pattern of MS we have.

This totally fits with my experience: my disease has never seemed to be halted by the meds, or even overpowered temporarily by steroids.  Even chemotherapy didn’t seem to have any effect.

And when my neurologist told me that in his opinion I had transitioned to secondary-progressive, I thought “Well, duh?!  I’ve been thinking that for several years now!”

In fact, this study may be suggesting that I’ve been progressing since day one, that although my diagnosis was Relapsing-Remitting Multiple Sclerosis (RRMS), it may actually have been some progressive form all along.

In truth, once getting this diagnosis 20 years ago, I suspected that doctors often gave the diagnosis as RRMS then they could prescribe one of the first-line drugs for MS that are only approved for this type.

MS medication is so expensive and has required self-administered, regular shots, sometimes as often as every day.

This study seems to confirm for me that giving myself the regular, sometimes painful, shots did nothing to slow the progression of my disease.

And that’s the mystery for all of us: there is yet no way to measure the effects of any of our medicines.  I have no way to measure this, so I only have my gut feeling.

My doctor agreed that the latest medication I was administering faithfully had obviously not impeded my progression, so we agreed that I should stop.

The silver lining is “Yay, no more shots!” 

On the other hand, “Whoa, no more shots. Of any kind.”

He explained to me that prevailing theory at the moment is that MSers who transition from RR to SP eventually reach a plateau and that we can hope that I’ve already reached it.

He did arrange for me to try a new oral drug for MS, A——-, which helps some of the affected walk more confidently.  I’ve been taking it for two months now but have experienced no change.

If the results are replicated by other labs and larger studies, MSers may someday be able to take a blood test at diagnosis to see which type they have.

It’s another small piece of the puzzle.

Related links

Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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