Ocrevus

[dailygrump40]

Oh. I forgot to mention yesterday. My nuero also made mention that the Ocrevus infusion may be a thing of the past for those who choose to switch to an injection once every 6 months. Cutting out the 6 hr infusion. He was going to a conference about it. I'd be happy to not have to sit in the infusion center for 6 hrs getting an infusion. The way he explained it is the shot sounded like it's a little deeper then just under the skin that gives the medicine time to saturate into your bloodstream to be distributed into your whole body. Things sounds like they're a changing

[greaterexp]

Thank you for sharing this. I hadn't heard about this possible change.

[OKgal]

I've heard some mumblings about this. If you were to ask me to pinpoint a source, I couldn't do it. I read so much in various places and I don't always take notes.

[dailygrump40 in reply to OKgal]

I usually don't remember to take notes. Thos one actually stuck with me and I do like to hear that others had heard similar stuff.

[OKgal in reply to dailygrump40]

I found where I had seen this statement. It's, apparently, neurologists talking to their patients about it possibly going to once a month self-injection at home. So I have no real credible source. There is a pubmed article, published almost a year ago, talking about mab drugs going to self injection versus infusion. You can read the abstract here:

ncbi.nlm.nih.gov/pubmed/300...

[Frances_B in reply to OKgal]

That's interesting, but the article does not specifically refer to MS but to "MABs" and their route of administration. As mentioned in the article there are quite a few MABs which are used with other chronic illnesses (e.g. Infliximab for Crohns, etc) and which are given as infusions. I suspect any such changes with MS drugs are far more likely to occur with those such as Tysabri (natalizumab), which is a 4 to 8 week infusion cycle, long before any changes would be contemplated with much newer drugs such as Ocrevus - which is barely out of the starting gates. I reckon it's probably not worth getting your hopes of being able to avoid infusions up too far just yet - these sort of things always take years not months...........

[IFwczs]

Thanks for letting us know. I just sent an email to my neuro asking him if my August infusion is going to be replaced by an injection and will let you know what I find out.

[IFwczs]

I have received a reply from my neuro's nurse. They have not heard anything about the Ocrevus infusion being replaced by an injection, so it is going to be an infusion for me in August.

[dailygrump40]

IFwczs. It's still being tested? Looked into? Sorry though.

[carolek572 CommunityAmbassador]

An injection once a month? The reason that I chose Ocrevus was that it was only twice a year. I really hate to be tethered to any DMT, especially if it needs to be administered daily, weekly or monthly! To me, less is more.

[dailygrump40 in reply to carolek572]

It's only once every 6 months. Same as infusion.

[carolek572 CommunityAmbassador in reply to dailygrump40]

Oh, I am not sure how I thought that the injections would be monthly. This sounds interesting!

[Lilith08]

I’m not on Ocrevus but from recent conversations it seems the infusion would be better, financially, for those on Medicare. That’s another angle to consider.

[Allen5280]

I'm fixin to have my next infusion around the 9th of July. Exact date has not been set. My Doctor set me up with a company called Heritage Biologics. They have set things up so all the infusion supplies, premedications and the Ovrevus come to me. I have detailed instructions on my next infusion process. I'm awaiting a call from Aspire Home care to set the exact day a Nurse will come to oversee and monitor my infusion right here in my recliner! So... my infusion fiasco is being rectified. Also I will be getting more monitoring of my condition from Heritage and they will be managing my treatment and results of treatment. They have made everything so much easier and instead of denials from my Medicare and Medicade coverages I recieved notice in the mail almost a MONTH prior to infusion. So looks like all is going to smooth out and be much easier! I will even be receiving an EpiPen just in case a really bad infusion reaction takes place but is not expected. So my next infusion will be much better

[Jackjosh]

I always end up sitting 8 or longer hours

[janetb1968]

My Tysabri is an infusion every 4 weeks my next one is on the 28th June. Being very low JCV positive 0.59 that is always at the back of my mind. Not sure if ocrevus is better than Tysabri xxx

[dailygrump40 in reply to janetb1968]

Ocrevus is the most powerful M.S. drug there is. If Ty is working for you and your number for JC stays down. I wouldn't see any reason why you need to switch.

[Hidden]

Does it really take 6hours every six months? How long is the new one going to take? I am currently on copaxone 40mg. my doc wants me to switch to octavus.

[dailygrump40 in reply to Hidden]

I just had my 2nd full dose. The 6 hrs consists of premeds with 1hr observation. 4hrs to infuse Ocrevus then 1 hr observation. Totalling 6hrs.

[Johngm in reply to dailygrump40]

I just had my first full dose that took 6 hours start to finish this past Tuesday. I pray for some positive results

[lbenmaor]

Thanks for letting us know.

Best Wishes,

Leslie

[Juliew19673]

I just had my 3rd full dose of Ocrevus this last Tuesday - it took 4.5 hours, so it's getting shorter time wise and I was able to talk the nurse into NOT giving me the benadryl, was happy about that, and didn't have any allergic reaction! I would take just a shot if available, but the infusion is not bad for me.

[Johngm in reply to Juliew19673]

Just wondering if you have seen anything positive yet. Nothing has ever helped me. I've tried Ampyra, Beta Serone, Abagio and now Ocrevus. Wondering f there is really anything that works to improve us.

[Juliew19673 in reply to Johngm]

Yes, my walking gait is better and my exhaustion is not as intense. My cog fog dissipates.

[Hidden]

I am on medicare and Emblemhealth medicare part d. I am a retired teacher ad have been on copaxone 20mg and 40mg for 20 years or so. I need an assitance co-pay 0f $6000.00 a year. Anybody please help me with the overage of ocravus. Is it more expensive. what is the bill like: pprice of medication, the benedrol tylonall whatever befor injection and finally the injection itself. I think it's moore thhan copaxone? HELP ME PLEASE ANYBODY with covrage and reimbursments inf.

[hairbrain4 in reply to Hidden]

I switched from 40mg Copaxone to Ocrevus. The drug company pays for my Ocrevus infusions. I had to apply for it through my neurologist. This drug doesn't fall under part D because it is an infusion. it falls under part B. I have BCBS Advantage & they picked up most of the infusion center costs except for about $30. Your neuro should be able to get you most of the information. The first infusion is broken down into two infusions two weeks apart. The cost for both of them together were $101,948. The actual Ocrevus medication was $97,500, the balance is the Benedryl, Methylprednisone, saline, the IV Tubing & the machine that regulates the IV. I don't have the billing for the first full injection yet, but its probably about the same. Hope this helps.

[Hidden in reply to hairbrain4]

thank you very much for all your useful and precise info. I made a copy of it and will research and apply your much needed advice. omg!

[Hidden in reply to hairbrain4]

brain4 thanks again. Let me know about how it felt:the 2 first injections. How long. Is the price you stated about 1 or 2 injections? How about the one injection in 6month ...the price, how it felt etc....How is it # from copaxone for you. This drug is about x4 or 5 x the price of copaxone....omg. How can I afford It. I already have a $5000.00 co-pay . This is worse. I am totally fricked out..in theanxiety zonex1000000.

[dailygrump40 in reply to Hidden]

[phone] is the Ocrevus number to call for help with drug costs

[Hidden in reply to dailygrump40]

thanks daily40 I skipped the grump part .thanks for the phone#. by by

[dailygrump40 in reply to Hidden]

Anytime I can help. The copay assistance is wonderful. My copay was 6,000. Needless to say. The drug is now free.

[Raingrrl]

dailygrump40 ...I was just at a Educational Forum for MS Patients. While there I talked to a rep for Ocrevus at length about the drug trials and asked if there was any new info she could share. Nothing was mentioned about a shot replacing the Ocrevus Infusion. In order for this to happen, there would have to be new trials proving that the safety and efficacy of an every six months injection is similar to the infusion. I’ve heard nothing about trials to study this specifically in Ocrevus. The change in protocol would have to be approved by the FDA as well.