ActiveMSers Forums  

Go Back   ActiveMSers Forums > ActiveMSers.org Forums > Dave's SCT Journey

Reply
 
Thread Tools Display Modes
  #1  
Old 07-13-2017, 02:20 PM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,056
Default Health insurer thwarts Plan H

For now it looks like I will stick on Rituxan, and perhaps participate in the Biotin trial. Moving to Ocrevus is a no go since my health insurer said they would be happy to pay... half. Yeah, half. Since I don't want to regularly blow over $30K, I think I'll stick with Plan G for the time being. Sigh.
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
  #2  
Old 07-14-2017, 01:42 PM
Marinadca Marinadca is offline
MS Gladiator
 
Join Date: Apr 2010
Posts: 308
Default

Health insurance companies are so strange! Mine wont pay for Rituxin at all but covers Occrevus with a $40 copay!
Reply With Quote
  #3  
Old 07-17-2017, 11:46 AM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,056
Default

Bizarre. But my health insurer just got busted for avoiding millions in state taxes, so there may be something else going on...
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
  #4  
Old 08-01-2017, 03:10 PM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,056
Default

I got a 500 mg infusion of Rituxan last week. Right now I'm being considered for a clinical trial of Biotin. We'll see if I get accepted.
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
  #5  
Old 11-06-2017, 07:33 PM
PhoenixMSgal PhoenixMSgal is offline
Junior Member
 
Join Date: Nov 2017
Location: SF Bay Area (Phoenix 11/1/2018)
Posts: 2
Default

Quote:
Originally Posted by ActiveMSers View Post
I got a 500 mg infusion of Rituxan last week. Right now I'm being considered for a clinical trial of Biotin. We'll see if I get accepted.
I'm confused about "a clinical trial of Biotin". Is this something different from High Dose Biotin?
Reply With Quote
  #6  
Old 11-07-2017, 08:02 PM
penkalet penkalet is offline
Member
 
Join Date: Apr 2010
Posts: 66
Default

Dave, Ocrevus as assitance program so I pay nothing But I am on Medicare ( I am old )so may be it is different. Sorry. Alain
Reply With Quote
  #7  
Old 11-08-2017, 11:29 AM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,056
Default

PHX, I did get accepted into the Biotin trial, which is testing high dosage (100mg 3x daily). Many docs are recommending it, but the evidence isn't in and the supplement according to one study could make your MS worse. We'll see how it goes with me, but after 3 months, I'm slower still, so I'm not terribly optimistic.

My insurer is now covering Ocrevus. I may switch or try a different drug altogether....
__________________
Dave Bexfield
ActiveMSers
Reply With Quote
  #8  
Old 11-08-2017, 11:47 AM
MSLazarus MSLazarus is offline
Member
 
Join Date: Jan 2011
Location: western MA
Posts: 40
Default Rituxan vs Ocrevus

Quote:
Originally Posted by ActiveMSers View Post
PHX, I did get accepted into the Biotin trial, which is testing high dosage (100mg 3x daily). Many docs are recommending it, but the evidence isn't in and the supplement according to one study could make your MS worse. We'll see how it goes with me, but after 3 months, I'm slower still, so I'm not terribly optimistic.
My insurer is now covering Ocrevus. I may switch or try a different drug altogether....
Hi Dave,
I have been on rituxan for about 5 years. When Ocrevus came on the market I read and read to determine the difference. (I know, animal vs. human origin). I could not understand a difference.

I did understand the politics of patents and money. Then I listened to presentations by Vollmer and he used the words interchangeably. He kept saying Ocrevus/ rituxan. He said they were the same.

Yet, my neurologist says that if the rituxan stops being helpful that I will switch to Ocrevus because they are "slightly different". Huh? I will because I have a neurologist that I trust. But, huh?

After 5 years on rituxan I am in great shape. There has been progression but there have also been restorations of formally lost abilities. I am still very active.

I wondered why you were considering the switch.
Reply With Quote
  #9  
Old 11-08-2017, 06:39 PM
AMFADVENTURES AMFADVENTURES is offline
MS Yoda
 
Join Date: Sep 2009
Location: Colorado
Posts: 844
Default

Good question Linda. I wondered about the difference between them too. Apparently, although the drugs are very similar, there are a couple of potentially important ones. With rituxan, possibly because of its animal derivation, there is a greater chance of the patient developing an antibody against the drug thus rendering it less effective. Also, the two drugs actually work slightly differently in the way they attack B-cells resulting in ocrevus having a higher and more immediate toxicity rate against the target cells than rituxan. The following article explains this but in a lot of words.

https://multiplesclerosisnewstoday.c...ents-concerns/

Last edited by AMFADVENTURES; 11-08-2017 at 10:12 PM.
Reply With Quote
  #10  
Old 11-08-2017, 08:02 PM
MSLazarus MSLazarus is offline
Member
 
Join Date: Jan 2011
Location: western MA
Posts: 40
Default Thanks for your detailed answer.

I understand the differences as you explained. I wonder at the significance but, my neurologist recommends that I take Ocrevus if the rituxan stops working. He said there were small differences between the two that would be worth a shot if I end up against the wall.

On another MS site that I use I posted the following about some of the improvements I have experienced while on rituxan.
Here it is:

Linda, do you recall how long you were on Rituxan before you started to notice a difference in the way you felt?
My answer:
That is the question I keep asking myself.
What I do know is that, as with IVIg, I get an immediate benefit.

But, long term improvements are like accumulating long term disability. Change happens slowly and you don't really notice. It was several years before I started saying that I could stand still, I could walk a few steps without my walker and I was much more energetic throughout the day.

In the last two years on rituxan those improvements have remained. I am now active 10 hours a day. I can stand and walk for several minutes at a time. What I mean is that I can walk unaided for several minutes at a time. In the clear, no walls to use for support, just walking like I used to.

So, I would say that real improvements started showing up after a couple of years and those improvements have only gotten stronger since then.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 08:35 PM.


Powered by vBulletin® Version 3.7.0
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
ActiveMSers