I had my 5th ocrevus infusion today. All was good until it his 200. If you are on ocrevus, you know. I started to get chest pressure. Like an elephant sitting on my chest. Last time i got it too but i powered through. Then the nurse said i should have told her. So today i told her. Instantly she shut it off and game me more benedryl and more solumedral. And Pepsid. I said you can turn it back on. She had to call my neurologist. He was off so the neurologist that was covering suggested i go to ER. I told my nurse i has a EKG within the last 2 months so i am not going to ER.
Have you had the chest pressure? The actual drip was so fast it should have been slower. Was your ocrevus drip fast or slow? I have a neurologist appt jan 7th. I can ask what can be do next infusion. Ocrevus is working for me so i don't worry want to change meds.
I feel alright tonight just a little tired
Thank you
Jenny
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jkdavid99
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Sorry you felt that way. Were you able to finish the infusion?
I have never made it to the top infusion rate. I usually get some itching in the ears and mouth so they stop and give more benedryl, sometimes solumedrol, then we finish at a lower rate. It takes longer but I feel safer.
My last infusion I had to stop because I felt heart racing, some pressure, like a panic attack. It turns out I had a UTI. After it was treated I went back and the infusion went fine.
As ocrevus is working for you I hope you can continue on it. Let us know what your neuro says. Perhaps you have a UTI you are unaware of ??
i am so sorry this happened ...no hasn't happened to me but everyone is different ...i would call the doctor now to see what happened ,i wouldn't wait to talk to them ...so sorry ,i wonder why it was going so fast ,i guess they thought you would want it to ..they should of asked ...wow ...take care and i hope all works out for you ...be safe ...
Hi jkdavid, I have had 8 infusions so far and I've never experienced the pressure you describe. Absolutely frightening! Are you able to continue the treatment? Also, do you feel it's working well for your MS?
So sorry it sounds like a reaction & that is what my nurses would have done then waited 30 mins checking on me then if things stopped they would have restarted the infusion at a slower rate. See what your Neuro has to say in Jan. I would not have gone to the ER either! Mary
Thank you for all your responses. Today i have so much energy, but i woll probably crash hard tonight. I wish the nurse would have restarted it too. Now I have to wait intil friday to see what my neurologist wants me to do. Not sure if i can finish it. That med is probably in garbage. I will ask for it to be diluted with saline and maybe more benadryl halfway through. I do feel like ocrevus is working really well for me so I dont want to switch to a different medicine. Thank you all
I am so sorry to hear about your experience. I have been on Ocrevus since 2017 and never had that experience. The only thing I could say is to to check that that your infusion center has experience with Ocrevus. I found that more experienced nurses with Ocrevus understand best how to administer the therapy and knew what to ask and look out for. Also, helps to have highly qualified MS specialist in your corner. General neurologists, in my experience, are limited.
Hello Jenny, I feel so sorry to read your experience.I' m on the same meds.I' m awaiting my 4th dose which ment to be given just few days before Christmas. Basicaly my neurologist decided to give it in January as I had some palpitations from the last one.It was bad and it continued for 5 weeks.I honestly did not feel well at all.I' m sure it' s related to the lengh of administration. There for on my last check up with neuro I inssisted not to have it so fast.We all on this med and each of us are given 600mg no matter if you weight is 50kg or 100kg.Of course each body would react diffrently.I' m a bit scared as well to have next dose because in general I felt so unwell and this unpleasant stage lasted almost for 5 weeks.Palpitations, tinitus, I was so unsteady on my feet.. to sum up the last dose of fast Ocrevus was rather with opposite effect which I got used to. OCREVUS Is for me the best drug and I cannot imagine to be without it.I wish you all the best and especially to have a strengh to explain you thoughts to MS staff and mainly neurologist how you felt and feel.Take care.
Thank you for your response. Heart palpitations are so scary. I hope this next one is better for you. I usually do well with ocrevus. I hope i can continue. Good luck
I don't pay attention to the drip rate during the infusion but know I got the faster rate the last time. I did not have any side effects.I hope you are feeling better!
Hey Jenny, i hope you are feeling better by now. were you worried it was a heart attack? that's the way people describe the chest pain. Anyway I understand about not going to the ER but you don't have to wait until the 7th to call your doc. Monday is the 3rd. Best wishes. Please keep us posted.
Sorry you had to go through that. You might want to think about Kesimpta. It works on the B cells just like Ocrevus does & it's one injection a month. I had to quit Ocrevus as it was making my heart race & I have A-fib. After my last infusion, it felt as if it did the opposite of what it had been doing. I was having flares weekly, no balance & major muscle spasms. I had an MRI during that time & there were no changes. My insurance wouldn't approve Kesimpta so I just changed to Vumerity. It's like Techfedera with fewer side effects. So far so good. Good luck to you & hope you can stay on Ocrevus.
I've been on Ocrevus for 3 years and it has worked perfectly. My last 2 doses have been at the faster drip rate with no side effects.My Neurologist had ordered normal blood work witch came back a little off what it should be. My vitamin D level was through the roof which is not a Ocrevus issue but there was an issue with my HG level which I don't know what it is but has scheduled a another blood draw before my next infusion.
As far as your heart rate you should have gone to the ER. Just because you had an EKG recently doesn't mean anything other than the day it was taken. With the systems you were having you should have another too compare the 2 and see if Ocrevus was the cause of the chest pain. You could have a mild heart attack.
Thank you all. I went to ER today just to be sure. I was still having a dull pain in my chest. Everything is great. EKG, Chest x ray and blood work, all good. I will talk to my neurologist friday and see if we can change a couple things. Definitely a slower drip. Thanks for all your responses. 🤗
I have been on Ocrevus for since it first came out, not sure what year that was 2016 or 2017. But I haven't had any problem so far. I've had slow infusions and fast infusion. I'm sorry to hear about your reaction to it. Hoping the best for you.
During my 2nd Ocrevus infusion, my nurse was in a hurry, like his pants were on fire. He said "they" (who is they?) said that infusions can be given in 2.5 hours now. He speeded my drip waaay up, and my throat began to close. I had to ask that it be slowed down, and that helped. Really? 2.5 hours is too fast. I hope you get some sensible answers on Friday at your appointment.
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