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peterfrancis
2 months ago

@mlgilber1

I hope it goes well for you, understandable that you feel a little nervous but, you’ll be in good hands so don’t worry too much.

Such a shame that Ocrevus has not been passed for PPMS sufferers here in UK.

All the best


mlgilber1
2 months ago

@peterfrancis I was really upset that it wasn’t approved for ppms and I hope that changes.


stumbler
2 months ago

@mlgilber1 , good luck, I hope it goes well. 😉


mlgilber1
2 months ago

@stumbler Thank you, I appreciate it!


vixen
2 months ago

@mlgilber1, lots of luck for tomorrow, how exciting! It will be great if you could post afterwards how you feel, and then update us. From what I have read so far, the process seems nice and straight forward. Take some cool music or a great book to help make the most of the stillness x


mlgilber1
2 months ago

@vixen My first infusion went well, but took a total of 7 hours with an hour of monitoring included. It took longer because even with the Benadryl and steroids first I had some reactions. My face and scalp were so itchy! They gave me Benadryl 2 more times with Pepcid and would stop the infusion until it went away completely and would start it off slow again. Other than that it went well. It hasn’t made me feel worse or anything. I have my second 1/2 dose on the 26th and I’ll keep you posted! Thanks for wishing me good luck. I hope you are doing well!


chueykooh
1 month ago

I haven’t posted in quite some time. I just completed my second half dose of Ocrevus. My first infusion did not go all that great. I had what they call a severe reaction, but not life threatening. I got hives and started itching very bad at the 3rd infusion rate increase, my second infusion went extremely smooth compared to the first. I got the steroids and benadryl pre-meds and needed no further intervention. My first infusion took about 10 hours and 150mg of benadryl, second infusion took about 3 hours and had no reaction. i hope yours went well for you.


mlgilber1
1 month ago

@chueykooh Hey! My infusions went well. First one I had a few reaction so they had to keep stopping it and gave me Pepcid and Benadryl two more times in addition to the premed steroids and Benadryl. Second infusion was great. No extra meds needed and no stopping or slowing of the infusion. Steroids make me feel like crap and make my symptoms worse so next time I won’t be getting those because my nurse ok me not to have steroids since my body reacts so negatively. I’m glad everything went well even though we both had reactions to the first half dose!!!


rachschader93
1 month ago

Really wanna try tysabri as I didn’t have any problems what so ever But keeping an open mind. Ocrevus was an option I explored. Please keep us updated on how your doing. I’m really glad that your second infusion went better than the first. I agree steroids nessecery evils. Glad you don’t have to take them any more.


chueykooh
1 month ago

@mlgilber1 , me and steroids don’t mix well either. I will say though, the 100mg of premed steroids I get with the ocrevus infusion makes me feel great the following day. The following 5 or 6 days after that are hell though. Flushing, heart pounding, weakness, headaches, mood swings, and all kinds of bad stuff are what they usually do to me. The last time I had steroids a couple years ago, it was 1,000mg a day x 7 days, then a month and a half of oral taper, that absolutely destroyed me. I noticed after my first Ocrevus infusion that I actually felt worse overall until the steroids started wearing off, then my walking slightly improved and my cognition also improved. I’m curious to see how the second half of this infusion will treat me. It’s only been a few days. My acupuncturist had me take chinese herbs for adrenal support ( Dan Zhi ) this time and that made a very noticeable difference. I’m glad your second infusion went well, that’s exactly how mine went also. I wasn’t scared for the first infusion until I had a bad reaction, then I was very scared for the second one. Keep us posted on any changes you notice.


cmr828
1 month ago

I am going for my first ocravus infusion on Thursday after waiting almost a year to get approved by my insurance company . My doctor has to categorize me as chronic progressive to get the insurance company to approve it. I can’t wait- a year is a long time to be without treatment.


mlgilber1
1 month ago

@cmr828 I’m so excited for you!!! A year is a long time to wait! I thought the 3 weeks was bad… I’m so happy you’re getting on Thursday. You have to tell me how it goes! Mine went well, but I hate the steroids! They make me so much worse… after the first half my nurse approved me to do it without them, but I decided to get them again since I had so many reactions (all minor) the first time and they didn’t recommend it. I didn’t have reactions the second time so I will not be getting steroids the next time. It always takes a month for them to wear off for me and they make my symptoms worse. I know a lot of people on ocrevus and they love it and doing really well, just know sometimes it makes you worse before getting better. Some people have less symptoms immediately after. I hope all goes well! Please keep me posted! Good luck!


cmr828
1 month ago

My first infusion went well on Thursday. No reactions— starting to get back into my routine but still feeling kind of wiped out.

How are you feeling? Getting ready for your next dose?
Let me know:)


mlgilber1
1 month ago

@cmr828 I’ve had both doses. No reactions during the second dose. I got super tingly after both though that I think was from the steroids. It’s died down, but my hands are bad and they never were before. Praying it goes away! Glad it went well!


jolea
1 month ago

Hi.
Good luck hope all goes well.
I have PPMS. Hopefully will be approved in the near future.
Keep smiling and be positive. Exciting time turn those nerves into good vibes.
LJl. 🙅‍♀️


avengr13
6 days ago

@mlgilber1. How was your infusion? During? After?


mlgilber1
6 days ago

Hey @avengr13! My infusion went really well. During the first dose I had some minor infusion reactions, my head and face were itchy, but they took care of it right away. I had no reactions during the second half dose. I had no side effects from the infusion after except the typical side effects from the preinfusion steroids and steroids always make me feel worse, my whole body felt like it was buzzing, but that went away after a couple weeks. My MS nurse has approved me to try the future infusions without steroids if I want for next time. Now I feel great and I’ve noticed most of my symptoms have lessened tremendously or even disappeared. I haven’t had trouble with my speech or swallowing. My walking has really improved. I can now walk fast and I haven’t had to use my walker since the infusions. Also, my legs feel almost 100% normal again when they had been numb and tingly for over a year. My energy and fatigue has improved a lot and my memory. My pain and spatisicity has gone way down. I don’t get as nauseas as I was and haven’t been having bladder issues anymore. My nerve pain was really bad head to toe and now it doesn’t bother me at all and it’s almost gone. I’m super grateful that things are finally getting better because I was going downhill fast for awhile and thought my symptoms were permanent. How has your experience been? Have you had your first infusion yet?

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