Ocrevus and PPMS

[Ilia1392]

Hi all. I'm new here and interested in others who have had their first Ocrevus infusion. I had my first infusion in May; my second is scheduled for November. My MS is one of pain: cognition & balance bad; pain in legs, hands, arms. Ocrevus seems to have made the pain less and balance a bit better. Did anyone else have similar results?

[ssdw1958]

After my first dose the pain I was having in the muscle above my knees subsided so much it was a good thing. Some of the numbness in my fingers wasn’t as intense. I need to make my appointment for third dose.

It would be nice if it made other feelings come back more.

We will see I’m glad your doing well.

[Ilia1392 in reply to ssdw1958]

My numbness is in the nether regions where the sun don't shine. Thats still the same unfortunately. I sincerely hope your third dose has wonderful results

[ssdw1958 in reply to Ilia1392]

Thank you I hope it’s better also

[MrBigCat]

Ilia1392 welcome, your picture is beautiful.

[Ilia1392]

Thank you, sweet of you to say. Not too shabby for a 67 year old with MS for 27 years.

[WAshingtongirl]

Welcome, Ilia1392 . A few here have started on Ocrevus and continue to share their experience with everyone here. I hope you notice some improvement, and look forward to hearing more about you and your journey on Ocrevus. 💕

[erash]

Welcome @llia 1392

Glad to hear you seem to be having good results so far from Ocrevus

Pretty photo😊

[Pink-1]

That’s great. I haven’t noticed anything positive yet but am hopeful.

[milligrace]

Ilia. I am on MyCounterpane.com which has a way to search a whole library of posts and moments. You can go there, register and type in ocrevus and get a ton of moments about the drug- even see people during their infusion! Hope it helps.

[Ilia1392 in reply to milligrace]

Thanks Milligrace. I will go to MyCounterpane and sign up. Hope to see you there.

[Yooper]

Ilia1392: Hope and pray all goes well. I have my second coming in January. Keep us posted. God's Peace

[SlmHarris]

Lila I have had my first round and my 2nd does will not be until March of next year.

I haven't seen any difference but I am having more vertigo. I don't think this has anything to do with the Ocruvis. I had this issue before my treatment. The difference is the headaches have intensified.

I wish you the absolute best! Please keep us updates!

[Ilia1392 in reply to SlmHarris]

Hi Slim. I too have been having bouts of vertigo, and at times terrible piercing headaches. I will see my Neurologist Nov 7 and will give him my list of symptoms. My 2nd Ocrevus infusion will be given later in Nov. I'm still very unsteady and fell early this a.m. from my bed. First time I've fallen in quite a while. Oh the leg pain is better but now my hands hurt. And my left hand is still very weak. Thanks for sharing and reading this long answer.

Be well & God Bless.

[Nom_De_Plume]

Ilia1392 Welcome, Ilia!! 🌸🌷😀

[Jesmcd2 CommunityAmbassador]

Welcome Ilia1392 as you can see, we are a pretty friendly group! So please jump in at anytime!😊 We are all Family💕

Jes 🌠👻

P.S. Love the picture!

[TonyiaR7]

Welcome lila1392!! Your photo is beautiful. I hope Ocrevus lessens some of your symptoms. My neurologist wants me to wait and see. My disease has remain the same since she saw me in the summer. I will still be keep up with others as well your journey.

[Ilia1392 in reply to TonyiaR7]

Hi Tony. Hope this finds you feeling better. I am copying the following I just sent to another member. My hands get tired so easier to copy & paste.

I too have been having bouts of vertigo, and at times terrible piercing headaches. I will see my Neurologist Nov 7 and will give him my list of symptoms. My 2nd Ocrevus infusion will be given later in Nov. I'm still very unsteady and fell early this a.m. from my bed. First time I've fallen in quite a while. Oh the leg pain is better but now my hands hurt. And my left hand is still very weak.

May the angels help you on your journey.

[dianekjs]

Ilia1392 , I started Ocrevus 6/22, so am just a little bit behind you. My energy is definitely better, I’m walking better, and my leg pain seems to be improving as well. I still have bad days but they’re not as frequent, and my good days have been getting better. I also have a connective tissue disease and my associated joint pain has eased considerably. I was told to expect the most benefit to come after the six month infusion, so I’m looking forward to that (despite my difficulty with infusion reactions and total wipe-out for a week after each dose!). That’s great that you’re seeing positive changes; please keep us posted. 😊

[ssdw1958]

Hi I had my second dose last week at first I was doing much better but I was telling my husband last night that my legs were dragging a lot more but as he was saying the weather has changed the pressure has gotten higher there is a storm coming up from the south, i should have been a weather person. I hope this passes but it is suppose to pour and be windy Wednesday.

I hope this to will pass.

[Fancy1959]

Ilia1393, it's Fancy1959. I am glad you found it and you are now part of our extended family. You have sound a safe place full of some of the most compassionate and caring people I have ever met where do you can come and ask questions, like you just did, voice concerns, or simply speak to someone to truly understand what you're going through.

I am living with secondary progressive MS. It's not having much luck and slowing down my disability on the other therapies that I had tried. I had my second 1/2 dose of Ocrevus on October 3rd, 2017. I've noticed subtle changes already. My spacidity is somewhat less. When it hits I am able to work through it quicker and make my arms and legs respond quicker to my request to bend them. And just this past week I have noticed an improvement in my walking. I've noticed when I walk behind my rollator I seem to be walking with a longer stride that seems to be much stronger when I am fresh. When I get tired it's the same old same old drag yourself along! I am extremely lucky that my MS is not painful to the extent many people live with daily. I also have extremely bad balance, and some cognitive issues but I fight through those and I'm okay with where I'm at right now.

With only a month behind me I am extremely hopeful that the trend of improving my disabilities, however small, keeps moving in a positive direction. I can't think of one negative side effect, so far, that I have encountered from Ocrevus. Yeah.

Please keep in touch. Jump in and answer post and ask questions as often as you can. The more you interact with us the quicker you get to know us and we will get to know you. Once again I'm glad you have found. And I would like you to remember one thing. That together we are stronger! Take care until we talk again.