The dreaded Ocrevus CRAP GAP
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- Опубліковано 14 жов 2024
- It's that time of the six-month window... The "crap gap" between when your last dose of Ocrevus is wearing off and you still have some time before you're due for the next one. A lot of anecdotal reports of this feeling from MSers on it-- but is there a reason?
Thanks for the information
Your honesty is much appreciated. Hope the gap is minimized for you.
I am on Ocrevus and definitely experience the crap gap. My balance and dexterity get much worse. The best thing I have found to do is to know your limits. Then, you have a better chance of not getting hurt.
Your video was great. I am currently in what I believe is the crap gap. Just over the past few days to week my new normal with MS is "off" and weaker, stiffer, etc. Next Ocrevus infusion is three weeks away. Thanks for taking the time to post this so we don't feel like we have totally gone batpoop crazy. Good luck.
Thank you for the validation as well! 😂 Happy new year, here’s to more ms craziness
I am in the crap gap now and usually feel it a few weeks before my infusion. I also read a study that Ocrevus should be given based on BMI or body weight and that would help (not sure). I did ask my neurologist to move up my infusion and she refused as said insurance won't cover it. Very frustruating. I actually had a really bad reaction to Ocrevus during my fourth infusion as they did a fast rate. If it happens again during teh fifth infusion I am going to have to switch to Mavenclad (no more MABs). Thanks for posting this and I hope your infusion happened and you are on the other side. All the best.
Good morning. Our daughter is just starting this journey and has had Ocrevus twice. Thank you for the information. We will look for any issues in January before her next scheduled infusion in mid-February. We are in Illinois so as you point out the weather and humidity/cold can affect how you feel. Thanks for the video. It might be a talking point with her doctor.
Definitely. One thing I forgot to say is that the feeling definitely does not outweigh the benefits/ease of Ocrevus! I’ve had no other side effects from it and it has kept me medically stable
@@mldrohan Thank you for the reply. She is also showing her symptoms mostly in check after two sessions. No progression or drastically slowing it down is our goal. It seems like a great treatment so far.
I wonder how many have a corticosteroid in their IV along with theDMT Ocrevus, Rituxan or whatever. Could that be another factorinto how we may interpret or state after infusion? I'd be curious to hear if there are any who refuse the corticosteroid along with the infusion and what they experience - crap gap or otherwise..
Surely it's a placebo thing? As B cells are still depleted way beyond the 6 months and this therapy doesn't influence any symptomatic issues.
🤷♂️🙃
I've been researching Rituximab (that's the one approved for coverage where I live), which is very similar to Ocrevus. From what I have read, what happens is that the infusion blasts the B cells and then over the next six months, the body slowly starts to make them again. So, as you get close to the time for your next infusion, you've got some B cells back, which could be why symptoms may start to increase again. I've also read that some patients can go longer or shorter times between infusions depending on how their bodies respond. It sounds like there are more options available with Rituximab than for Ocrevus though as far as drug coverage approval standards go.
Thanks for sharing your research! Makes sense. Yes, I’m familiar with Rituximab (and actually had it after my 2018 stem cell transplant, why my doctor decided to put me on Ocrevus). I think I’m going to ask my doctor to get me on a every-five-month cadence
Another question I have is ,whether there is a rush in B cell production as the b cell depletors reach is over and the body tries to replete B's.
Tysabri (natalizumab) does not kill T-cells ); instead, it suppresses their activity by sequestering them.
However. Ocrevus is different in that it targets B cells and kills them , however I can't help but wonder if the body once able to produce B's again (5 or more months post Ocrevus or whatever B cell depletor eyou may employ) - edit: if the body produces B cells at it's best accelerated rate? (sorry I typed incompletely at the first entry) So if one experiences crap gap (and it's not just the corticosteroids effect seemingly helping along with the infusion) but the body trying to accelerate B production in a glut..
That’s an interesting thought, about the B cell production. Regarding the steroid, I’m pretty sure it’s affects where off after a few days. I definitely felt the up from it when I was on Tabri, with Okus, not as much, but I do think it contributes. Did you see the study that came out last week, trying to write off the crap gap as a natural ebb and flow of disease activity? Every five months seems like a suspicious amount of time for something like that….
I am there now ..4 weeks til O ...I feel excessively drained ...drained...frustrated... irritable
Hang in there!
I believe to be suffering from this now. How long after your infusion did you start to feel better?
Usually a day or two, I think the steroid given as part of it contributes a lot to the initial bump. Good luck!