anyone else have this experience?

[pamgarner]

I am 1 month out due to have my 2nd full ocrevus infusion,it seems to me that about 5 months from the last infusion,I seem to be in alot more pain and weaker.I first thought it must be the heat but the last one the 2nd one about 5 months I experienced the same and it was winter ,can't blame the heat.Ocrevus told me they have heard this before,that 6 months may be too long between doses,but they can't change the time period and I don't know if I would want them too.anyone else notice this?

[Juleigh21]

I’ve had 43 doses of tysabri. I get it every 28 days. My experience is that it last for about 21 days but those last 7 are pretty nasty. Many of my MS symptoms return for the last week. My doc doesn’t want me to do ocrevus for fear it will only last 4 months and I’ll have 2 nasty months. He wants me to consider Mavenclad. He’s afraid I’m entering the secondary phase and thinks it’s my best hope at thwarting it. Good luck! I hope this next month goes quickly for you!

[pamgarner in reply to Juleigh21]

it never occured to me it could be other meds too

[carolek572 CommunityAmbassador]

No, pamgarner I haven't noticed this but I will look out for this at my next O dose which is in August. I have been told that weight and height of the individual seems to factor into the O effectiveness. Individuals who are on the petite side seem to have a better outcome. That has been my experience.

[pamgarner in reply to carolek572]

thank you for feedback,let me know

[carolek572 CommunityAmbassador in reply to pamgarner]

Okay

[Juliew19673]

Yup, after my 2nd full dose I had a very hard time waiting and not ask for the steroids. Had my third Ocrevus a week ago and I'm back to "normal." I'll see when I start to crap out this time.

[pamgarner]

yes i am trying to keep up with it too

[IFwczs]

Yes, I agree with you - my second full dose is in August. And I have read that patients complain its effects do not last till the next dose.

[pamgarner in reply to IFwczs]

i am living proof

[Raingrrl]

I seem to get weaker and much more fatigued starting about 2 weeks prior to my next Ocrevus Infusion. I just had my 4th dose and it’s been an issue for me each time. And like Juleigh21 , I was on Tysabri for a long time and had issues starting a week prior to each of those infusions too. I just had the same overall weakness and fatigue though.

[pamgarner in reply to Raingrrl]

ocrevus said they have heard this,well that info should be availible before we start treatment that this might happen,

[All7]

I’ve noticed the same thing. My last infusion was in April. Definitely doesn’t last for 6 months. I’m scheduled to have steroids in July for 3 days (halfway point between infusions). Maybe that will help. If not, I’ll be starting the testing for the mavenclad.

[pamgarner in reply to All7]

I hear you, never thought about new meds

[ahrogers]

I joined a Facebook page someone here posted about for Ocrevus people. There are several posts about what they call "crap gap". I have not experienced this though. I was even delayed by 2 months on a dose a year ago when I moved and had to wait for insurance at my new job to kick in then get in to a new neurologist. I didn't have any worsening then either. I have been on it 3 years now. I get my next infusion next week.

Maybe they can schedule you a little sooner than 6 months. It seems like some of mine have been more like 5.5 months between. Actually next weeks infusion is a little less than 6 months too, almost 2 weeks less.

[pamgarner in reply to ahrogers]

crap gap is right,they named that right! I will have a chat with dr.

[IFwczs in reply to ahrogers]

I am sure it's a question of money. Who is going to pay that frequently?

[LorenzoOilMom]

We have heard about this. My daughter, now 14 just had her first two Ocrevus infusions 2 weeks apart. Ocrevus I believe allows you to go as early as one month, (from the 6 months) so you could do 5 months instead of 6. My doctor said that we could switch to Rituxan if it becomes a real problem. We won't know for another 4 months yet. Ocrevus should be changing their dosing soon. There are over 80,000 people on Ocrevus, surely they have enough stats on this! Very frustrating! Also, I just saw an article about how they might be going to an injection instead of infusion every six months.

[pamgarner in reply to LorenzoOilMom]

I was on another med and injections before every other day,so I guess i was never without med like I feel i am now,injection would be ok

[Lilith08 in reply to LorenzoOilMom]

Could you share a link to the article? Someone recently mentioned hearing about a possible dosage change and it would be helpful to know more.

[IFwczs in reply to LorenzoOilMom]

My neuro's office was very upset when I asked them about injection vs. infusion and said they have not heard of an injection. They emailed me back within a minute. It is a very large and prominent hospital.

[LorenzoOilMom in reply to IFwczs]

The Ocrevus injection is not out yet, there was an article that they were working on it. Kind of unprofessional of your office to get upset when you asked about it. There are exciting new medical discoveries with MS every few months now.

[IFwczs in reply to LorenzoOilMom]

I guess someone has to pay for that fancy infusion center they have...

[LorenzoOilMom]

So sorry, I just did a search in my emails. My husband sent it to me & I can't find it. I believe he got it off the MS Society website.