Ocrevus first full dose

[Allen5280]

Well, 4 hours in a recliner had the same initial vertigo however was not as pronounced, a spliting headache and lower back pain. May be due to the length of time sitting without getting up and down every 15 minutes or so. Those continued throughout laast evening. Woke up this morning had to take off my shirt to see if i had a blue suit with a big red s on my chest! No suit or cape but i have felt great all day! Most likley it is the same as my initial infusion and is most likely the steroid. However I haven't felt this good in quite some time so I will take it as long as I get it. No vertigo today, unlike my first infusion, it stuck around for about a week after. Still had my lower back pain but my physical therapist worked my back muscles and they are doing better now. I am making such incredible progress in therapy. On the elliptical recumbent trainer I managed 1400 "steps" in 8min 30 seconds wound down for another minute and a half and totaled 1468 in 10 min. When I started about a month ago I could only get about 150 to 200 in 5 minutes with no resistance. I am now working at a resistance level of 4. In my hamstring stretches I touched my toes today!!! 🤣 I am feeling pretty good about everything right now. The pt/aqua therapy is turning out to be a great combination for my recovery process. If this is like my first infusion I am probably going to have a couple more good days then I may not feel so well for a little while so hopefully that doesn't end up ruining my 🦃 day, however I will be thankful regardless. I am going to try and start getting all caught back up on everything soon. Y'all as usual will be in my thoughts and prayers. Any newbies I want to welcome to the forum cause I have been out of touch for a little while. Also I have been trying to keep everyone updated with my Ocrevus Journey so if you would like to catch up on my earlier posts just click on my profile and then on my posts. And welcome to all the newcomers to the forum.

Thoughts and prayers,

Allen

[oklaguy]

that sounds great! you've really made some progress!

[Allen5280 in reply to oklaguy]

I am actually even shocking myself, along with my therapists. He was being funny today. About 7minutes into it he comes over and said "Allen, were going to have you go 20 minutes today" My response was "to bad, you should have told me that from the start, cause it ain't gonna happen"!! LoL yeah, he was just messing with me. I have met all the goals I have set for myself so far. So I keep raising them and it's starting to pay off. The pain isn't so tough to handle when I am able to achieve new heights. I am already way past what I thought I would ever be capable of again.

[oklaguy in reply to Allen5280]

that is awesome! and I'm sure it helps you feel better overall! happy for you!

[Allen5280 in reply to oklaguy]

It certainly does that indeed!

[Morllyn]

Great to hear that you are doing so much better Allen5280 ! Keep it up!

[Allen5280 in reply to Morllyn]

Morllyn , thank you I am going to do just that, for as long as I am able.

[kdali]

Wow! Just wow! I'm a little misty eyed. I hope your cape stays! Thank you for sharing your experience with us.

[Allen5280 in reply to kdali]

Yeah, I am excited about my progress. I am getting to the point where I am not dreading PT days and I am looking forward to them now. I will keep the updated coming

[kdali in reply to Allen5280]

That's amazing! 🎉

[jimeka]

Allen5280 it warms my heart to hear some good news for you. I pray that it continues. As always blessings and prayers Jimeka 🦋 🌈 🤗 🍫

[Allen5280 in reply to jimeka]

Thank you so much jimeka

[Doubled51]

Awesome news Allen. Keep up the good work. Don't worry about it slowing down just enjoy it while it last. Praying for you buddy.

God bless

Donnie.

[Allen5280 in reply to Doubled51]

Thank you Donnie, I appreciate all the prayers I get from everyone. Y'all are in mine as well.

[dianekjs]

Allen5280 , this is such fantastic news! I am really happy to hear this and hope it just keeps getting better and better. Does your infusion center have the option of a bed? If so, you may want to request one next time to see if it helps your back. They put me in a bed last time because of the infusion reaction I had the first time and I was very grateful they did, since it happened again the second time and was a 9-hour day. My doctor left orders for a bed for my December full infusion as we expect that it’ll be another marathon staying at the slower rate with twice the dose.

You've got me beat on the elliptical, although mine's not recumbent. I went from doing 45 - 60 minutes at high resistance before MS hit to struggling to do 3 minutes with no resistance now. Keep up the good work, I am following your journey with interest. 😊👍🏻

[Allen5280 in reply to dianekjs]

Thank you dianekjs , I will have to ask about the possibility of a new, or maybe even a hammock? 😆

As far as the elliptical, the recumbent is a big factor, in my humble opinion. I don't think I could do nearly as much in a standing position. I think the seated position gives me alot of help on it. I have been following yours as well. By the way, your profile picture always has me feeling as you are keeping an eye on me. 😁 I know, I know that was a bit corny, but hey what can I say always looking for an attempt to make someone grin, even if it's a bit of a stretch. I will try to keep my updates coming. Today I seem to be having a little swelling around my eyes. Not really bad or uncomfortable just feels puffy. Didn't wake up with quite the enthusiasm I did yesterday but still doing good. I hope ypur next infusion goes better. I was given the option of the oral benadryl or in my IV. I stick with the IV cause it knocks me out for the first hour and a half of it all. They just have to wake me to check my bp. It's like someone shooting me with a tranqulizer and about 30 seconds after they put it in i am OUT like someone hit a light switch. Thank you for the suggestion of asking about a bed.

[greaterexp]

Thanks for sharing your very good news and for continued updates. We will keep praying for more improvements.

[Allen5280 in reply to greaterexp]

greaterexp I certainly will keep the ipdates coming with my progress. Being able to do so is important for the entire MS community. It helps with giving me a sense of purpose and helps me feel like I am doing something worthwhile. Thank you for your thoughts and prayers.

[Raingrrl]

Thanks for keeping us updated Allen5280 . Your positive progress is inspiring. I hope it continues.

[Allen5280 in reply to Raingrrl]

Raingrrl , thank you I just pray that my experience through this all can help others in the MS community. I will continue giving all that I can to have an opportunity to help others whom suffer through this horrid affliction.

[melack01]

I am happy for the improvements you are having with Ocrevus. Praying you keep being another success story.

[Allen5280 in reply to melack01]

melack01 thank you for your prayers. I hope my journey is a help to us all. That hope gave me the strength and courage to start Ocrevus in the first place. It so far had been the only DMD I have been able to tolerate. I am in hopes it is going to be a big step in the right direction for all the MS community.

[bxrmom]

So happy you are having such great results with your meds. Glad laying down helps when you get your infusions. Look forward to more good updated.

Jessie

[Yooper]

Thanks for keeping us posted. Great to hear of your progress!! Those of us now on Ocrevus appreciate the updates. Praying you have a great Thanksgiving and keep improving. God Bless

[Qt314grl]

Newbie here! Wow, what an amazing story you have. I’m very interested in ocrevus and will be talking to my Dr about it in dec. I wonder if they would give it to someone newly diagnosed like me?

[Allen5280 in reply to Qt314grl]

Qt314grl , I will keep posting updates. If you like, you can click on my profile and check out my previous posts. I have been trying to keep updates voming with my Ocrevus journey. Welcome to the forum, I have found it to be a great tool coping with MS. As far as the DMT choices that will be a decision to be made with your doctor. As with any of the choices there are alot of possible side effects and risks associated with the treatments. They are almost as unique for each individual as the affliction itself. For me I have to look at the risk/reward index for each and what they could possibly do to help/harm my health. Getting all the available information before making a choice is very important. For me, Ocrevus was the optimal choice and began the process the day after it was approved by the FDA. I was not willing to do tysabri due to a high JCV count. Being that I have been on 3 previous dmt's with horrible result it was pretty clear that Ocrevus was the next best choice. That being said if it would have been availableto me when I was first diagnosed it would have probably been the first choice. If you have any questions I will do my best to answer them.

[Qt314grl in reply to Allen5280]

Hey Allen! Thanks for taking the time to respond. It’s really nice to have a community of such welcoming folks during a very dark time of my life. I want to be as agressive that my dr will let me be with this monster. I’ve been reading up on the med profiles and comparing them with the risks and benefits. The SEARCH document from this site was very useful. I’m leaning towards ocrevus if the dr approves too.