The Crap Gap is real. I have decided to stop Ocrevus and go back to Tecfidera due to the severity of fatigue, nausea, and headaches the Crap Gap has caused. This started 4 weeks before my next infusion. I also had very similar symptoms the week following my loading doses. I have heard it works great for others, but not for me. Good luck.
Did you wait for any results before you stopped Ocrevus? My painful side effects kick my ass, but my results are MS is stable, no new lesions, with some lesions shrinking. Despite the pain I would never give Ocrevus the flick despite the painful side effects. Results outweigh side effects completely.
Diagnosed 1997 and then 6 months later also diagnosed with l h o n Worst exacerbation popped up 2015, which is actually when I went what most people believe or call vegan I am on a diet because this is a gut disease, started out studying the practice of Dr Roy swank and his practice was moved to Dr McDougall although I never met them, I just studied what they found in their research
I have PPMS and I’m on Ocrevus, every 6 months, but I find it’s the side effects of O that return a month before my next infusion...not necessarily my MS symptoms. It happens in the exact same order as the first month’s side effects...first it’s stiff or ’concrete neck’, then it’s scapula pain, or ‘growing wings’ because the outer edges of the bone are really painful like my body is trying to grow wings (nothing angelic about it btw), then there’s ‘crowbar rib’ where it feels like someone is trying the pull my ribs out with a crow bar... that is a ‘shock you awake’ pain, with a gasp at the instant agony that is a 10/10 pain (and I have a high pain threshold and have had multiple major surgeries with 6/10 unmedicated pain, max!) and then of course there is the ‘nail gun head band’, where it feels like someone has used a nail gun to secure a headband across the top of my head ear to ear. More than a migraine. Lots of ‘tools’ used I know, but it’s the only way to describe this odd yet intense type of pain I’ve never experienced in my life. So I get these side effects, in that order that group together kick my ass for a month after O, then 5 month down the track...’concrete neck’, ‘growing wings’, ‘crowbar rib’ etc...in the EXACT same order when the Ocrevus is wearing off. It’s good that ‘Concrete neck’ gives me a warning that all these are ramping up, but weird that it only started and only happens after and before Ocrevus. So I was wondering if this type of pain perhaps is specific to my Ocrevus interaction with PPMS lesions and their location, or do they happen to other PPMS Ocrevus patients as well? Doctors have said ‘musculoskeletal pain’ can be a side effect, but that is vague, and mine is oddly and harshly specific. Thoughts?
I’d like to add that my PPMS is stable, with no new lesions, and some have even shrunk...so I put it down to the more painful Ocrevus is, the more Ocrevus is working.
Wow, great description of the strange side effects. Yes, the scapula pain is weird. I get that too! It seems especially sensitive to heat and during the crap gap. Thanks for leaving a detailed comment. We are not alone!
The Crap Gap is real. I have decided to stop Ocrevus and go back to Tecfidera due to the severity of fatigue, nausea, and headaches the Crap Gap has caused. This started 4 weeks before my next infusion. I also had very similar symptoms the week following my loading doses. I have heard it works great for others, but not for me. Good luck.
Thanks! I tecfidera has worked well for you then?
Did you wait for any results before you stopped Ocrevus? My painful side effects kick my ass, but my results are MS is stable, no new lesions, with some lesions shrinking. Despite the pain I would never give Ocrevus the flick despite the painful side effects. Results outweigh side effects completely.
I'm on Tysabri and didn't know much about this medication, thanks for the info! I stumble on my words too! That's MS for us lol
How has Tysabri been working for you? how long have you been on it? I'm curious about the longevity of these DMTs. Thanks for the comment!
Am I Trippen I've been on and off of it for a few years I think now. Horrible I know, but no positive test for pml yet - bonus
@@StephDespiteMS does it seem to help with the fatigue?
Diagnosed 1997 and then 6 months later also diagnosed with l h o n
Worst exacerbation popped up 2015, which is actually when I went what most people believe or call vegan
I am on a diet because this is a gut disease, started out studying the practice of Dr Roy swank and his practice was moved to Dr McDougall although I never met them, I just studied what they found in their research
I have PPMS and I’m on Ocrevus, every 6 months, but I find it’s the side effects of O that return a month before my next infusion...not necessarily my MS symptoms. It happens in the exact same order as the first month’s side effects...first it’s stiff or ’concrete neck’, then it’s scapula pain, or ‘growing wings’ because the outer edges of the bone are really painful like my body is trying to grow wings (nothing angelic about it btw), then there’s ‘crowbar rib’ where it feels like someone is trying the pull my ribs out with a crow bar... that is a ‘shock you awake’ pain, with a gasp at the instant agony that is a 10/10 pain (and I have a high pain threshold and have had multiple major surgeries with 6/10 unmedicated pain, max!) and then of course there is the ‘nail gun head band’, where it feels like someone has used a nail gun to secure a headband across the top of my head ear to ear. More than a migraine. Lots of ‘tools’ used I know, but it’s the only way to describe this odd yet intense type of pain I’ve never experienced in my life. So I get these side effects, in that order that group together kick my ass for a month after O, then 5 month down the track...’concrete neck’, ‘growing wings’, ‘crowbar rib’ etc...in the EXACT same order when the Ocrevus is wearing off. It’s good that ‘Concrete neck’ gives me a warning that all these are ramping up, but weird that it only started and only happens after and before Ocrevus. So I was wondering if this type of pain perhaps is specific to my Ocrevus interaction with PPMS lesions and their location, or do they happen to other PPMS Ocrevus patients as well? Doctors have said ‘musculoskeletal pain’ can be a side effect, but that is vague, and mine is oddly and harshly specific. Thoughts?
I’d like to add that my PPMS is stable, with no new lesions, and some have even shrunk...so I put it down to the more painful Ocrevus is, the more Ocrevus is working.
Wow, great description of the strange side effects. Yes, the scapula pain is weird. I get that too! It seems especially sensitive to heat and during the crap gap. Thanks for leaving a detailed comment. We are not alone!