Turning Corners with MS: Ocrevus, Biotin, and 2018
Like a lot of people with MS, I took part in the “Great Ocrevus Rush of 2017,” with the fanfare surrounding the release of the first therapy in the United States known to have some ability to stem the advancement of primary and secondary progressive MS.
I wrote about it, did the first two infusions, and received the same hopeful inquiries and support from my friends and family. And I’m scheduled for my third infusion in just a few days, on Jan. 8.
I also recently completed my first 12 months taking biotin.
Ocrevus (ocrelizumab) and biotin play important roles in my approach to dealing with MS; the former hopefully serving as a firewall against progression, and the latter ideally playing a role in re-myelination and possibly even restoration of function and capacity in some of my central nervous system.
For as long as I can remember, I’ve thought of the end of the year as turning a corner from one year to the next, thinking — perhaps hoping — that somehow whatever narrative I stitched together and hung on the prior year might positively inform the new one.
As if.
Yet the year’s end made me think about what — if anything — either drug is doing for me.
The disease’s very unpredictability seems to me to make much of an assessment difficult at best. My symptoms continue to gradually worsen. I’ve never had a lot of identifiable flare-ups, so there haven’t been many to reduce or eliminate. To be honest, so far, I’m not sure either has done much for me.
Or have they?
There’s an argument to be made that my symptoms might be even worse without one or both of the drugs. The only way to find out for sure is to stop taking them. Given the disease’s unpredictability in progression, even that assessment seems dicey. It’s a confusing dilemma, one that lots of people with MS encounter.
Curious about what others are experiencing with the drugs, I stumbled upon “Scientists are seeking new strategies to fight multiple sclerosis,” a November article in ScienceNews that’s helping me build a little bit of a framework that makes sense — at least to me, and at least for now.
For starters, there’s this:
“Multiple sclerosis is arguably the most complex disease ever described,” says Sergio Baranzini, a geneticist at the University of California, San Francisco, in the piece.
While I didn’t necessarily want to read that, the affirmation that everyone else finds dealing with this disease confusing seems somehow reassuring.
Part of it, Baranzini says, is that MS involves our autoimmune and central nervous systems, two of the body’s most complex systems. And part of it, according to Ashley Yeager, the article’s author, is that we still don’t know what MS is.
“Scientists aren’t even clear whether multiple sclerosis is a single disease or a multitude of maladies,” she writes.
Ocrevus, Yeager notes, isn’t a cure. “In fact, none of the 15 FDA-approved drugs for MS, which all modify or suppress the immune system, actually stop the disease. The drugs only reduce the number and severity of flare-ups and, in some cases, slow the visible marks of brain damage.”
Ocrevus “offers no relief for 30 to 40 percent of patients with primary progressive MS,” she adds.
I’m still hopeful about the drug and its efficacy, as is my neurologist, along with plenty of others. Yet my flare-up-free history feels like it’s flying in the face of the drug’s sweet spot, and I’m keeping my hope in check.
The same goes for biotin. I haven’t noticed any type of improvement and can’t say if it’s effective or not. On the other hand, who knows?
What Yeager’s article helped me better understand going into 2018 is that MS is an inextricable part of my life’s narrative and will probably always be. The sooner I’m OK with that, the better.
It’s possible, of course, that neither of the drugs will help me with the disease. It’s also possible that perhaps scientists and researchers will learn from why and how the drugs failed me and others and how they could be improved, and in doing so, take one step closer to figuring out “the most complex disease ever described.”
My experience with MS — good or bad — might somehow inform that.
That’s a narrative I can live with.
Happy New Year’s and best wishes for 2018!
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Lori Beauchamp
I have RRMS, had Ocrevus infusions last August. Also started Biotin regimen. After failure with 5 previous drugs, I see a marked improvement in a number of areas.
Balance, Endurance, Cognitive challenges, & Fatigue. I’m feeling completely positive I have regained my sense of normalcy & HOPE.
MS is insidious, but I believe staying informed, taking excellent care of myself, having a bank of Drs that are knowledgeable & listen to me help me accept & keep positive in the face of adversity!
Giovanna Lambrianos
Encouraging. Thank you ??
Richard R.
how much biotin do you take?
anonymous
Biotin is no longer being assessed for use in MS and it has not shown any positive outcomes
Todd Koerner
If that's the case, someone should inform USC, because I just started a 2-year study on high-dose biotin there.
Deborah Benson
I too have just started the Biotin trial, where did you hear that it is no longer been assessed
Ardelle
How much Biotin are you taking
Mike Knight
300 mg once daily...thanks for reading my column, I hope it was helpful!
Ingrid
Important to know: Medday withdraws licencing application for high dose Biotin for progressive MSers
Medday, the makers of Biotin have formally withdrawn their application for EMA (European Medicines Agency) marketing authorisation for progressive MS drug Qizenday.
Qizenday is a capsule medicine that contains the active substance biotin and is taken orally. The drug was to be used to treat adults with the progressive form of multiple sclerosis (MS).
How the drug works is not well understood; however, it is thought that the medicine acts on enzymes (known as carboxylases) to increase energy production in the damaged nerves and helps to repair the protective sheath around the nerve cells.
Three of these enzymes are involved in energy production, while a fourth is believed to be involved in the production of sheaths around the nerve cells.
In the letter Medday sent to the EMA, notifying it of the withdrawal, the company stated that the decision was based on the CHMP’s (The Committee for Medicinal Products for Human Use) opinion that the clinical data presented do not allow the Committee to conclude on a positive benefit-risk balance for Qizenday.
A small pilot study provided evidence that a high dose of biotin could have an impact on disability and progression in MS patient. A larger clinical trial then provided further results of disability improvement in patients taking a high dose of biotin over a 12 month period.
Dr Frederic Sedel, co-founder and CEO of Medday said: “The decision to withdraw the application was based on the understanding that the EMA was not ready to approve high dose biotin for the treatment of progressive MS based on a single –relatively small- phase III study. This decision means that we will present a much stronger case in the future, based on the results of the ongoing SPI2 study, which is a much larger trial. The SPI2 trial is still looking at patients’ improvement together with decreased progression which is a very ambitious goal. It will also give more information about the subgroups of patients who will benefit the most from the drug, about brain imaging and other measures of efficacy.”
The SPI2 trial is being conducted with primary and secondary MS patients from North America and Europe, which includes study centres in Edinburgh, London and Manchester. The trial is still recruiting and is looking to have reached completion by September 2019.
Source: MS-UK
Date: 20/12/17
Mody
You’re right ???
Adam Hanmer
Great article. Thanks for writing and thanks for these emails I really value them as someone with PPMS in UK. Waiting to see if we get Ocrevus this year to give it a whirl. Keep up the good work. Adam.
John Rush
At ECTRIMS this year there was some concerning data regarding Biotin use in MS patients (progressive). Associated (note, I did not say caused, small sample size, too): I encourage you to discuss with your physician:
http://www.mdalert.com/ms/ectrims/article/highdose-biotin-increases-inflammation-and-relapse-in-ppms
Teresa Barr
I found your observation very similar to how my body is reacting (or not) to High potency Biotin -1 year
I have my 3rd infusion of Retuximab- similar to Ocrevious and wonder as you, whether it makes a difference.
(I may be Secondary Progressive).
Thanks for your perspective; it just helps knowing I am not alone with the same thoughts.
JR
Excellent article. I find myself in the same boat, ocrevus five months ago and biotin for the past year. I too have symptoms slowly getting worse, wondering would they be even worse without? I wonder if in
20 years people will look back and say all of these treatments were like throwing a snowball at a moving car in an attempt to stop it. Who knows?
Mike Patterson
My wife has been diagnosed with PPMS since August 2015. Her doctor put her on copaxone, biotin (300 mg per day), Ampyra, and vitamin D. She continues to get worse. In 2017, she had 3 infusions of Ocrevus. She has had no positive response to Ocrevus. By the way, biotin can cause a false positive in lab tests for thyroid disease. Her thyroid doctor killed her thyroid by mistake even though he did know about the lab test issue.
merlin
After reading Loris comments on PPMS and using OCREVUS it does give this 66 year old some hope there has to be a future without MS I just want to ģo for a walk with my wife caregìver and hòld my new grandaughter happy new year Merlin diagnosed in 2001
Karen
Merlin,I understand how you feel. I'm 70, diagnosed in 2007 with PPMS and getting progressively worse. I've had the first two complete rounds of Ocrevus with minimal reaction (although my BP spiked on the 600 mg dose). Whether or not it's working is squishy, but after waiting 10 years for a drug for PPMS I'm cautiously hopeful. Although I'm not wheelchair-bound, I rely on walking/riding aids to get around, and that's alright. I/d also love to walk with our two grandsons and my hubby/caregiver. Praying it comes soon for all of us, and congratulations on your on your new granddaughter.
Tracy McCann Olson
I feel the very same way ! 30 years with Ms and turning 50 in June. I have been on everything on the market since 1994 and I continue to worsen. I am no longer working or walking . I am hopeful that something will come around the corner but I’m not that positive about it
Julia
Has anyone experienced sudden vision loss following 600mg dosage of ocrevus?
BRENDA BLAKE
I began Ocrevus in June 2017 and had 2 doses. I'm scheduled for my next infusion in Jan. I don't notice any improvement. I may tire more easily, but not sure if I just push myself more than I should. I had no bad reactions, except some itching, from the first two doses. For anyone who has had a full dose, did you have any bad reactions from it? Thanks for everyone's comments.
Karen
I had my two 1/2 doses in June 2017. I then had the full 600 mg dose December 4, 2017. I didn’t have any issues and all went well.
It took from 10:30 - 3:30 and then and hour observation. I’m SPMS now and have not had any miraculous improvements. In fact, I think I’m worse than ever.
Always praying and hoping for a cure!
Sarahjean Moss
Did you do the infusion with solumedrol? I have started this infusion also. I had fatigue before I started, but since my last infusion I have struggled with constant fatigue.
Jonathan Mitchell Elsenbroek
Hey Mike, I had to look up the word inextricable, but I totally agree. With much of what you wrote. My nest dose of Ocrevus is later this month. I don’t take Biotin but I do do many things to alleviate the pain in the ass that is MS. Here’s to taking one step closer. Happy Holidays. Go Falcons. Thanks for sharing.
JE
Mike Knight
Thanks so much for reading, best of luck to you (and us all) in 2018!
daan
Mike and Jonathan, "inextricable" might be the new word for 2018 that best describes MS. Happy New Year!
Mike Knight
Thanks for reading...and best of luck in 2018!
Sam MB
Hi-
I was in a phase II clinical trial for Ocrelizumab (ocrevus) from 2009-2011, and it worked spectacularly for me. I was very happy to see it finally approved. I have RRMS, though, so I can't speak to the PPMS folk out there. I was fortunate to be at a research hospital being treated by the PI there for the trial. Given my MRIs then (Christmas lights!), I had nothing to lose. And now, I'm going to be happy if after the first full does last week, I can feel a little more stable in terms of walking again. I know I'm very lucky it worked for me, and I hope everyone finds some relief soon! I do take high-dose Vitamin D, but not Biotin. I need to do some reading on it--thanks for the note!
Joy
Mike, thanks for your article. My brother may be going on Ocrevus. Has there been any improvement to date for you? Do you Twitter or Facebook? I’d like to chat more...
Joy
Mike Knight
Thanks, Joy, I've sent you a DM
Jes
I have PMS, 8 months on 100mg biotin 3× daily and do have some benefits,worth trying
Lisa
Ive been on biotin since December 17. Definate improvement to energy. I also take Ldn which has eradicated painful stiffness in legs. I have drop leg but am still walking somehow with no walking stick but an orthotic. If this is all I get out of biotin then I'll be happy to continue. No dmt,s for me. Just the above and Vit d.
Anna
I wish everybody all the best with Ocrevus :-)
I believe strongly in DMTs but I don't believe in supplements anymore. Biotin made me feel bad and lots of other supplements that I've tried only cost lots of money and didn't help at all.
Charlene Sugarman
My name is Charlene Sugarman and I have been dealing with MS for Many, many years. I have been curious about using Biotin for other reasons and noticed your article on The use of Ocrevus and Biotin together in the trail at USC. I currently taking Copaxone Injections. I am Very Interested in being Considered to Participate in Your Trial. My Hope is not lost....
Steve Adams
Mike, great article. Any changes to your regimen or thinking about these two drugs, almost a year later?
Mike Knight
Thank you, Steve, I appreciate it. No, I haven't changed my regimen, but I am still not sure if either are doing anything for me. Nor is my neurologist. It is still one of those "you'll only know if you quit taking the drugs" dilemmas. My foot drop continues to worsen, muscle loss/atrophy, new nerve pain, etc., though if I understand things correctly, it could be argued that *perhaps* these are all related mechanical/muscular issues and that this loss of capacity is just the next logical point of that continuum. That's *if* I understand things correctly!
FWIW, I recently ran across another "pro" biotin report, here: https://www.neurologyadvisor.com/ectrims-2018/high-dose-biotin-progressive-multiple-sclerosis-treatment/article/807137/
My next Ocrevus infusion is scheduled for early January 2019. Fingers still crossed...thanks for reading the column and I hope this helps!
Mark
Thanks Mike, when you take ocrevus do they test you for the JC virus? From what I read ocrevus seems like a rebranding of tysabri. As ocrevus is still in its infancy some are expecting PML cases. They both are a monoclonal antibody both end in nab. I wonder when there ever going to have a JCV vaccine. It seems like taking ocrevus at this time is kind of like playing russian roulette with your life because if you get PML you’re pretty much done.
Mark
Thanks Mike, when you take ocrevus do they test you for the JC virus? From what I read ocrevus seems like a rebranding of tysabri. As ocrevus is still in its infancy some are expecting PML cases. They both are a monoclonal antibody and both end in nab. I wonder when there ever going to have a JCV vaccine. It seems like taking ocrevus at this time is kind of like playing russian roulette with your life because if you get PML you’re pretty much done.
Mike Knight
Thanks, Mark, I appreciate you reading the column. I was tested very early on in the run-up to my diagnosis (2013) for JCV and do have the virus. I think the incidence rate for PML and Ocrevus seemed low enough to me that using it was worth the risk since there seems to be no other option for PPMS. I am due for my next infusion in early January. I am not sure that it is doing to much for me, don’t know exactly what it is doing *to* me, but right now I continue to think it was worth the gamble, at least for another couple of rounds of treatment. Thanks again, I appreciate it!