I did not realize prior to diagnosis and until I got treated with DMT how bad MS was. It's only after getting better that I realized how bad things had been: fatigue, brain fog, leg pain (this might have been total Vitamin D deficiency).
It's like it happened all over again, prior to my Ocrevus infusion. I did not notice that I was slipping back into fatigue, weakness... 3 weeks after infusion and it all disappeared again.
Pay attention to symptoms. you don't need a relapse for MS getting back at you.
Written by
anaishunter
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I’m coming up on my sixth Ocrevus infusion this December. I seem to have a 3-4 week “crap gap” prior to the infusion. My neuropathy gets worse and my level of fatigue is consistently terrible no matter what I do. A few days after the infusion, things settle down and I’m back to what I consider my normal. Annoying as heck!
I have heard that some in the forum get this 'crap gap' (excellent description, Raingrrl ) that happens when you get close to a next Ocrevus infusion, anaishunter , but I haven't noticed it. Recently had my 6th infusion and all is well. Perhaps I have accepted the reality that 'ms' is here to stay. Keep Smiling
I accepted the diagnosis and all that comes with it long ago. This is my 21st year since diagnosis. I had a crap gap with a Tysabri too but much shorter probably because the cadence of Tysabri infusions is shorter. You are lucky you aren’t experiencing it carolek572 . The strength of fatigue I experience during the crap gap is is frustrating and gets in my way.
Thank you carolek572 for giving me the word for it "Gap crap".
I've been on Ocrevus for 2 years but have only received 3 injections. Every 6 months is too frequent for me. Now I know that every 12 months is not enough. Still working with the neuro and many blood tests to find the right rhythm... Overall I'm doing good. Just need to stay on top of symptoms sneaking back in.
You just coined another one, anaishunter ~ 'gap crap'
You both are on top of your game!
As for the dosing of Ocrevus, yes, I believe that I could go longer between doses but not sure how long. I am also not sure how that could be measured. I will ask my neurologist that next time that I see them.
Neuro experimented w covid time. For my 6th she had me wait 7 vs 6 months and by B cells began replenishing so 6 months it is from here. I too thought I was experiencing “crap gap” but Neuro said “no”. She attributed it to the change in seasons (Spring & Fall here in New England) and the end and start of the school year. She said they are times of higher stress. How can I argue that? My kids were done with school in March due to school closure. My infusion sch changed to June/Dec.
Felt fine up til and surprisingly a couple days afterward (usually takes me 2-3 weeks to not feel the cruddy/tiredness) We’ll see how Dec goes. Maybe timing is the trick?
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