Why Do We Turn Into MS Monsters Just Before an Ocrevus Infusion?
It's tough when the medicine for multiple sclerosis starts wearing off
Something is happening to me. All four limbs have become heavier than usual over the past two weeks. My arms and fingers are stiffer and less responsive, and I’ve somehow managed to effect a shuffling gait in my wheelchair. My eyes tire quickly, to the point it seems like I’m trying to see through the wrinkled surface of plastic wrap that isn’t stretched tightly enough. My thoughts are increasingly scattered, and my voice occasionally slows to a weak slur — or even once, what sounded like a growl.
Don’t worry, it’s nothing supernatural. I’m a little hairier than usual, but that’s just because I’m trying to get a jump on “No-Shave November.” Besides, while I might be a bit forgetful, I think I’d remember a bite from a large canine. I’m not worried about infection from the undead, either, because an accidental (and completely made up) benefit of multiple sclerosis (MS) is that it makes us zombie-proof. Sadly, even zombies don’t want our brains.
I’m annoyed by all this, but not overly concerned because I know my increased MS symptoms are tied to what’s coming at the end of this month. No, not Halloween, although that could explain why my thoughts have turned to mythical creatures. Instead, it’s because my 11th Ocrevus (ocrelizumab) infusion is on the 28th, and I’m in the midst of the aptly named “crap gap.”
Right before an Ocrevus infusion
This unfortunately isn’t anything new for me. I started Ocrevus when it became available in 2017, and while I don’t recall problems surfacing just before infusions in the early years, it’s been noticeable over the last three. Some times are better than others, but it always seems to be there, at one level of severity or another.
The crap gap is the slang term for the two-to-four-week period before an infusion of Ocrevus, when the last dose is wearing, or has worn, off. It’s not an official diagnosis, but it’s familiar to anyone who routinely takes a strong medication. Many professionals not only accept the gap as a very real phenomenon, but also explain the return or worsening of symptoms as simply the signs of a withdrawal.
It makes sense and happens to be the explanation to which I subscribe. Ocrevus is infused every six months and is a potent immune-system modifier. It stands to reason that there would be withdrawal symptoms when a patient tapers off of it near the end of every dosing cycle.
Our bodies would probably respond negatively to the cessation of anything we’d been putting into them for an extended period of time. Mine gets upset when I stop putting water in it.
I’m certain there are plenty of “affectionately” dubbed medication withdrawal periods throughout the rare disease community. For example, Halsey Blocher, an SMA News Today columnist as well as my columns adviser, recently informed me that in the world of SMA, they have the “Spinraza Slump” for periods without that medicine (nusinersen in generic form).
Please leave a comment and share your experience with the Ocrevus crap gap or that of your own disease-modifying therapies.
And as an afterthought and completely in the Halloween spirit: If a zombie apocalypse did occur, what would a world with only the undead and people with MS look like? The mind reels.
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, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Beth Stone
Thank you for your Service!!
Benjamin Hofmeister
You are so very welcome.
Ben
Randy
I switched from Ocrevus to Mavenclad -- Not sure if it is as effective Appreciate any Comments
FB
They are totally different modes of action - Mavenclad is an induction therapy while Ocrevus deletes certain kinds of immune system cells. If you ask Google about "mode of action for XYZ (insert name of drug)" you will be able to find out more info.
Benjamin Hofmeister
Thanks for reading Randy. I've never tried Mavenclad and unfortunately, wouldn't be remotely qualified to give advice re. it's effectiveness, if I had. Fortunately, I know a few good links to share.
http://multiplesclerosisnewstoday.com/news-posts/2022/07/01/mavenclad-real-world-efficacy-safety-similar-clinical-trials/
http://multiplesclerosisnewstoday.com/news-posts/2022/02/25/new-mavenclad-data-at-actrims-forum-2022-show-favourable-efficacy-outcomes-versus-other-oral-dmts-and-lower-occurrence-of-further-relapses-or-disability-progression/
Claudia N Chamberlain
Thank you! I've been on Ocrevus just as long as you and I have suspected as much. During Covid, my infusion was delayed by nearly 3 months. My doctor did the B lymphocytes test and they had not risen at all, she said due to the length of time I had been on it. Thus for the last 3 infusions, I have waited 7-8 months between. If it isn't the growth of B cells, I wonder what it could be that gives us that edgy feeling.
Benjamin Hofmeister
I guess (and that's all this is) that a rise in inflammation (from the withdrawal, not a resurgence of the disease process) is responsible for the gap and figure that's why I feel so much better after the IV steroid pre-medication. Again, just idle speculation from a guy without too much else to think about.
Thanks for reading!
Ben
Jessica James
Hi Ben,
I cackled all through your post. Switched to Ocrevus in March after 13 years on monthly IVIG infusions which finally quit working. Even though I just started, Ocrevus left me in "crap gap" for 6 weeks. Ugh! Like you, my legs each gained a ball and chain and my normally sharp brain took off on vacation. I was on vacation, actually, unable to schedule my 6 month infusion until a month past it’s due date. Ouch! I sure won’t do that again! Now I’m three days in and my whole body is still one big spasm. Wheelchair city. Hope treatment kicks in real soon.
If a zombie apocalypse happened with just them and us MSers, Zombies better watch out. They would not want to meet my angry persona when nothing in my body works.
Thank you for serving our country. Thank you for making me laugh. Cheers!
Benjamin Hofmeister
"Cackled"? Is that a Halloween joke? Is...is this a test? If I laugh at that, will I be fired? Did my editors put you up to this? ;-0
I think the baclofen is holding my spasms at bay, but I am very stiff this time. Can't wait for the 28th.
Ben
If zombies took over, I would go to the library and read all the books----on the first floor.
Jen Lombardo
This article resonates with me. I had a two-week crap gap and then luckily a two-day crap gap. I just had my last infusion on 10/12 and they tried the fast-drip which caused welts and IV benedryl needed. After the infusion, I was really weak and could barely walk (I use a cane day to day). I am on day nine after the infusion and I am walking very slow with my cane and y dizziness is still back. Can anyone comment about how long to then come out of the crap gap/infusion time and feel back to MS baseline? This infusion really hit me hard. Won't ever let nurse up my rate again.
Benjamin Hofmeister
Sorry to hear about your experience Jen! I haven't had an issue with the faster rate but like the disease, the treatment experiences are so variable. When I have an infusion, I feel great for about 24 hours then go into a tired slump for a day or so. After that I'm fine (baseline?) until about 2-4 weeks before the next infusion.
Thanks for reading. Hope I helped a little.
Dori Rocco
I'm starting Ocrevus next week after 5 years on Tysabri. I always had increased symptoms the week before my infusion. I was wondering what to expect with Ocrevus and I'm not happy to hear it may be a month of crappiness. I'll be checking my calendar now to make sure to schedule my life accordingly. LOL...
Benjamin Hofmeister
It really is the right med for me and I've been happy with it, but nothing about MS is ever easy it seems. Then again, a week or so of crappiness has been a small price to pay for no new or enhancing lesions in 5 years.
Ben
Tom Unrath
I, or more to the point, my wife, have also noted the "Crap Gap". Though we didn't have a name for it. I discussed the phenomenon with my neurologist who researched and discovered that Ocrevus can be given at the 5 month point. That seems to have helped me a bit,
Benjamin Hofmeister
Oh, my wife and I have a name for it, but it's not as nice as "crap gap". I've noticed some research being done re. the timing and dose of Ocrevus, in order to tailor it to the individual patient. We'll see how it shakes out.
Thanks for reading and for commenting Tom.
Ben
Dan Nicolini
I just had my 6th or 7th Ocreavus infusion in August. I have experienced the crap gap as well. Sometimes however I feel worse for a few weeks after the infusion as well. Other times I felt as if I couldn’t wait for my next dose due to symptoms etc…there have also been times where I remained at my baseline before and after. So In My experience if I am not sick, not run down or in a period of high stress my normal reaction to my infusion is a day or two of fatigue and then I’ll be back to normal. Ocreavus is a game changer I have had MS for 12 years , although slower and stiffer I walk without a cane and I continue to work full time.
Benjamin Hofmeister
Thanks for the comment Dan. It is variable for me too, but I usually notice something. It figures that our reactions to an MS med would be as consistently inconsistent as MS itself. Thanks for reading!
Ben
Chicago Mom
I've been on Ocrevus since 2018 and noticed a Crap Gap about a year later. Doctors didn't know what to think when I described my symptoms returning, no new activity on MRI, and my B cells were still depleted right before an infusion. I ran across the term Crap Gap in another forum about 2 years ago and just about hit the floor (out of shock, not spasticity) - they were describing exactly what I was going through. I wish Doctors were informed about this by Genentech (or put in the Safety Info & Indications). Before my last couple infusions, the Crap Gap seems to be getting crappier so we're trying 1 steroid infusion 1 month before my Ocrevus infusion. Hoping to bridge the gap!
Benjamin Hofmeister
Hi Chicago Mom! It's only been about 5 years since Ocrevus was approved by the FDA, so along with the trial participants, we're really the pioneers. Just like faster infusion rates, I think we'll see dosages and frequencies of infusions tailored to the individual patient. Our MS varies from patient to patient, so it stands to reason that our treatment might too.
Ben
malola
My sister has MS and uses ocrevus, the crap gap is real, specially in people with BMI over 25. I do think dosage should be more customized to each person and timing as well , like a cancer treatment where cells levels are studied on a personal basis rather than standard dosage for everyone , see link to study. I think MS is a cellular level illness and should be treated like a leukemia and look at each persons cell numbers , but this is just me
https://www.sciencedirect.com/science/article/pii/S2211034821006313#:~:text=Results,cognitive%20disability%20and%20sensory%20symptoms.
Jacob
Great post! Thank you for sharing!
I've been on Ocrevus since 2018 and am up for an infusion on Monday. I've actually been noticing "something" for the past few weeks having otherwise been completely stable for the past many months (and no worsening according to MRI). I didn't really think too much of it, but this might be a possible explanation, especially since quite a few others are also describing something similar.
I'll definitely be more mindful of this when it's time for the next one in 6 months.
Thanks again!
Benjamin Hofmeister
Thanks Jacob.
It may just be all in my head.
Wait, with MS, everything really is all in my head (and spinal cord).
Ben
Dan
I was on Copaxone for 14 years when it was decided that it wasn't working for me anymore. So in the summer of 2020 I considered switching to Ocrevus. However, I read about another anti-CD20 drug that was close to getting FDA approval, and that wasn't administered in a hospital via an infusion, but via a self-administered monthly injection. As someone who had been self-injecting daily for 14 years the promise of only having to do so monthly with Kesimpta sounded miraculous, but I also had been reading about the Ocrevus "crap gap", and that sounded to me like a real turn-off.
So I decided to wait a few months, and instead of starting on Ocrevus I switched to Kesimpta as soon as it became available in September 2020. I've since adjusted my monthly dosage to only take it every 12 weeks, as my lab tests show that my B-cell counts after that long remain negligible, something I was able to discover while I was on pauses to prepare for COVID-19 vaccinations.
I've had no adverse reactions or relapses in the 2 years I've been on Kesimpta.
I would encourage anyone on Ocrevus to consider Kesimpta as an alternative, especially if you experience the "crap gap".
Benjamin Hofmeister
Thanks for the comment Dan! I would always encourage people to be their own advocate (if they can, of course) and work with their neurologist to find what works best for them. I started on Copaxone initially but stopped as soon as the diagnosis changed to PPMS. My neuro prescribed Aubagio after that, not because it's recommended for PPMS, but because it showed some promise of holding off long term disability while we waited for Ocrevus to be approved. Unfortunately, it put my liver enzymes at dangerous levels, so I discontinued it too. Now, Ocrevus is the only approved Rx for PPMS, so I suppose my course is set. (no one tried Rituxin on me).
As for the gap, I hardly noticed anything when I was walking, driving, etc. I notice it more as I become more sedentary as though I'm hearing something else in the house when I turn the tv off. I probably should have said that, but I was too preoccupied with trying to be clever,
Ben
Jennifer
Thank you for your service!
I found this post because I searched "crap gap" because I think I'm starting to feel it. I've had two full doses of Ocrevus so far, due for my 3rd in two weeks and my left leg is achy and feels like it's going to give out on me once in awhile. My daughter reminded me that there's a such thing as the crap gap, I hadn't felt it until now. I am under a lot of stress right now too, so I'm sure that doesn't help. Thank you for posting this, besides giving me a laugh, it's helpful to read what other people experience and what helps. I noticed someone mentioned Baclofan, and I have it in my cabinet but have never taken it, maybe I'll need it this time.
Benjamin Hofmeister
Hi Jennifer and thanks for reading! You know, I didn't notice the crap gap before my infusion last month, but I have plenty of other times. There's something there even if there's not a perfect, textbook reason.
Baclofen is my friend but I'm sensitive to high oral doses and have a pump that continually delivers a much smaller dose right to my spinal canal. It was a life changer for me.
Robert
Diagnosed with PPMS in 2017. Started Rituxin without insurance coverage with the help of Mt. Sinai in New York, then switched to Ocrevus as soon as approved. Still using Ocrevvus and have noted the crap gap getting more severe over time. Still the only FDA approved and insurance company paid medication for PPMS. I remain able to walk without a cane, so I guess I can handle some crap gap.