Health insurer thwarts Plan H

[ActiveMSers]

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.

[Marinadca]

Health insurance companies are so strange! Mine wont pay for Rituxin at all but covers Occrevus with a $40 copay!

[ActiveMSers]

Bizarre. But my health insurer just got busted for avoiding millions in state taxes, so there may be something else going on...

[ActiveMSers]

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.

[PhoenixMSgal]

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?

[penkalet]

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

[ActiveMSers]

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....

[MSLazarus]

Rituxan vs Ocrevus

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.

[AMFADVENTURES]

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/

[MSLazarus]

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.

[AMFADVENTURES]

That seems to be it exactly Linda, if the rituxan doesn't seem to be working it might be worth a try to switch to ocrevus.

On the improvement front, I've noticed some minor ones too. I am walking better, sometimes without a cane, although I always carry one with me on longer walks because when things fall apart, it's not pretty. I know there is some permanent damage but if the rituxan keeps the MS at bay, I'm hopeful that I might continue to see improvements. Personally I think that's a pretty big deal at my age!

[MSLazarus]

Hey, I'm 70 and still expect great improvement!

That seems to be it exactly Linda, if the rituxan doesn't seem to be working it might be worth a try to switch to ocrevus.

On the improvement front, I've noticed some minor ones too. I am walking better, sometimes without a cane, although I always carry one with me on longer walks because when things fall apart, it's not pretty. I know there is some permanent damage but if the rituxan keeps the MS at bay, I'm hopeful that I might continue to see improvements. Personally I think that's a pretty big deal at my age!

Actually I am experiencing more than keeping things stable. Things have gotten better. That is, the big things that interfered with my farming life. Working 10 hours a day with no periods of great fatigue and being able to function under the intense pressure of selling at farmers market is extraordinary.

The rituxan has been and is working great for me. Could it be repairing? Maybe. That is the thought hiding in the back of my mind.

[ActiveMSers]

Waiting to hear if Ocrevus is my next treatment of choice. I'm due for a Rituxan infusion in a few weeks, so the time to call it is now. We'll see how it all unfolds. Plan H here we come!

[MSLazarus]

Good luck Dave

Waiting with Hope is better than waiting with Fear.
That Fear is a nasty little person. Likes to sneak up on you to startle and then runs off to hide. His cousin is Cowardice and she’s another story.
Hope dresses in comfortable clothes and can often be found giving hugs and smiles. Hope is well educated.

[MSLazarus]

Amount and frequency of rituxan infusions

This is a response I got from someone on Braintalk. I asked for specifics about how her neuro was setting up the dosing of rituxan because I had raised just this question with my own neuro. I am interested in more frequent dosing.

This is the information she gave me:
“I see Jacob Sloane, MD, PhD at Beth Israel Deaconess Medical Center in Boston. He said that Rituxan gets into the brain and spinal cord better at the higher dose. I just started the 1000 mg dose two times a year last October. Before that I was taking 500 mg two weeks apart every six months.”