Need opinions on Ocrevus!

[laurenhc]

Hi everyone, I don't write much but I do love reading all your words of wisdom on here! But today I'd really like to ask those of you who've had experience with Ocrevus to share your opinion of this DMT. Just so sick of dealing with the constant FATIGUE of this d***m disease, as well as all the other "issues" we all have. Thanks so much everyone. Lauren

[Xvettech]

Hi! I agree, the fatigue is the worst. Im not on Ocrevus because of cancer gene, but I was on Kesimpta. It stopped and never was fully effective for me. So now Im on Mavenclad and the difference of the fatigue is amazing! It’s way better! I still get fatigued but not nearly as bad!

[laurenhc in reply to Xvettech]

HI Xvettch., Thanks so much for replying! Ok I'll definitely look into Mavenclad. So obviously you're happy with it.. no bad side effects with that??

[Xvettech in reply to laurenhc]

Not yet. lol

your welcome & best of luck trying something!

[Cwright170994]

Good morning laurenhc 👋I've been on ocrevus since 2001, after my then neurologist found my RRMS is aggressive from a big relapse 🫣 even halfway through the infusion, I was able to walk with just a stick or the IV drip stand, rather than use a wheelchair 😁 I haven't had any side effects from it! One of the pre-medications is an antihistamine, and it's known to send you to sleep, which is why I kept on falling asleep between the nurses doing their observations 😅 even a couple of years ago, my husband caught covid, and he was scared of passing it onto me. But, doing the tests, I always tested negative while he tested positive 🤣 we'd swapped who cared for who because we had to, and that was 2 weeks after I had an infusion. The best way of knowing when I've got to that point is me not being able to safely make our brews in the morning.

The only thing with it is the crap gap 😬 briefly tried kesimpta, last year, but decided to go back to ocrevus after a few months, because I couldn't be bothered remembering to inject myself every month.

The issue with the crap the crap gap, it's a twice yearly issue. I've worked out how to overcome it for myself: have one tablet of methylprednisolone (a pre-medication) and I'll be right as rain for the day, maybe the day after 👍

So, try it, and if you don't like it, you can always switch to a different medication and see how that one works for you.

[Carlrossi94]

Hi, I was recently diagnosed in 2023 with MS and started ocrevus 11/23. I have 3 total infusion this far and have had no major side effects from the medication. My very first infusion I got an itchy scalp and had to slow the medication but was able to complete infusion, since then no itchiness during any other infusions. I was found to have no new lesion at last follow up and have no moved my imaging to yearly. Overall drug has been effective for me. Anything else you’d like to know just lmk. Thank you

[tompumo]

I've been on Ocrevus for about 5 years. It has no effect on me, day to day, I feel fine after the infusion. Its purpose is to slow the MS progression, and I think it is doing that.

[laurenhc]

Hi Everyone, Wowwww, what a response! Thank you so much for all the great information. I'm thinking I may have to try the Ocrevus! I'm excited! I'll have to let you all know how I do on it. THANK YOU SO MUCH FOR THE HELP!!

[Scamp56]

I have been on Ocrevus since 2017. The first few infusions had be feeling kind of "icky" afterwards, but nothing debilitating. The last three years have been easy with no issues. I think it is a case of your body getting used to the drug. I have had no new lesions since I started on Ocrevus. Good luck in your search for what will work for you.

[KGrayiskindaok]

Hi- I thought I’d add my two cents too. I was diagnosed in 2010 and now have PPMS. My neurologist put me on Ocrevus about a year ago. I was happy the clinic accepted my insurance (Yakima, Washington, USA) so went ahead with the first series of infusions. (The first one was is separated out to make sure your body could tolerate it). I did fine. No problems at all and no side effects for me. It was a good experience. I didn’t notice a reduction in my fatigue but the Doc said it mainly just slows disease progression. Then- I got the bill… Please do your research because I was billed a total of $6,325!! Without my insurance the statement stated the cost would have been $159,077. I was devastated and never expected anything remotely this high. I applied for charity care at the clinic and quite amazingly was accepted and my bill was reduced to zero. I am so thankful, but obviously this medication is too pricey for me. The kind people on this forum suggested I ask for help from Genentech (makers of Ocrevus) and although they are wonderful about paying up to 100 percent of cost of the medication after I received my bill, the clinic where I had my infusion refused to let them help me. I’m so thankful their charity care came through for me. So please please please make sure you know exactly what your cost will be first and call Genentech first. I wish you the best of luck😅

[Fannie6]

Hi I was on Ocrevus for approximately 3+ years, it was the only med that did me well! My neurologist took me off of it due to my age & possible side effects that could occur.I’ve always had the fatigue especially if I don’t stay busy & I’m in a Manuel wheelchair. God bless you with being fatigue!

[Tazmanian]

I was on Ocrevus for about 5 years I was happy with it then my MRI changed now I'm on Kesimta talk to your neurologist and listen to his advice good luck

[Mayzee12]

I was on ocrevus for yrs. and really liked it. I had to come off because I was having to many Uti's. Two months went by before I had another one, so we will see.

[1525Laramorestreet]

Good evening

I take Ocrevus infusions twice a year. It works for me and when it comes close for my next dose I can feel my body is ready. It does not take all the fatigue away but it helps. I have to take B12 for my fatigue daily and that helps. The main thing with the Ocrevus is that it keeps my MS stable. Unfortunately I have to take the good days with the bad.

[CatsandCars]

Fatigue is the other F word!Ocrevus is a good drug for many people. I did not find that it did anything for fatigue, however. You should check out Dr. Aaron Boster's YouTube videos on fatigue (and all of the others!). He runs an MS clinic in Dayton, OH, and has made it his mission to educate and empower people with MS. His approach includes exercise based on your abilities. drinking a ton of water, and exploring stimulant medications.

youtu.be/XxfD6V6qVZ4?si=9N1...(Not working as expected?)

I find, for myself, that listening to stimulating music while exercising and doing the simplest of chores keeps me awake when I'm feeling really sleepy, at least for a while.

I don't know your lifestyle, if you're still able to work, if if you're kind is stuck at home like me. If you are, my advice would be to continue or develop things in life that you're really excited about doing. Then figure out how to do them if you're well enough .For me, getting out of the house and talking to people, going to cruise nights with my husband, and doing things like seeing WWII bombers fly at shows, have done so much for my sense of being alive and part of the world. It gives me something to look forward to when I'm not doing well, and something happy to look back on.

Best wishes to you.

[laurenhc in reply to CatsandCars]

Thank you so much for that wonderful answer. And thanks for the YouTube attachment. Ill definitely be watching that! And also I appriciate all your thoughtful suggestions. Thank you

kindly.

[Mollyabigail]

Hi, Laurenhc! Next month, I will have my 9th Ocrevus infusion. The only side effect I have is a racing heart beat for about 8 hours. The infusion nurse (who comes to my house!) says the heart beat thing is a common reaction.No new lesions in 4 years.

For the fatigue, I try to ride my recumbent bicycle every day. I promise - - even 20 minutes a day helps with fatigue!! I could hardly sit up to apply my makeup before. But regular exercise helped. I am scared to miss a day, but occasionally, I do.

I hope this helps. Sorry for the late reply. 🥴

[laurenhc in reply to Mollyabigail]

Thank you so much for replying! That was great information. I'm definitely liking everything I've been hearing about Ocrevus. Everyone has been so kind to respond to me! Thank you all!!