Balance on Ocrevus?

[Myoak]

Hello,

I have one personal testimony and then some hearsay I feel confident in sharing...

My wife's balance has gotten noticeably better on Ocrevus. When she shared that info with her doctor the response was that about 25% of his patients on Ocrevus had reported the same benefit... a noticeable improvement in balance. Pretty remarkable and a very pleasant surprise.

Best wishes!

[Mamabug]

Hello,

My wife's balance has gotten noticeably better on Ocrevus. When she shared that info with her doctor the response was that about 25% of his patients on Ocrevus had reported the same benefi.!

wow. Does your wife still have RRMS or has she progressed to SPMS?

[Myoak]

Hello,

Mamba, in response to your inquiry whether my wife is RRMS or SPMS...

I believe our attitude and view has helped guide our treatment choices over the years. We believe there is simply MS and the difference between RRMS and SPMS is how much reserve capacity there is in the central nervous system... in other words, we are RRMS until we have exhausted the reserve capacity of our CNS to do work-arounds of damaged nerves.

At that point, when we have exhausted our reserve capacity, we transition from RRMS to SPMS.

The most important point, I believe, is to be on a DMT which will delay the time when we transition from RRMS to SPMS for as long as possible. A DMT needs to be highly effective in preventing new lesions and flares, which obviously helps preserve our reserve capacity to figure work-arounds of nerve damage.

In my opinion, and according to scientific trial results, the older MS DMTs just are not as effective as Tysabri or Ocrevus. Therefore, a patient on less effective meds will transition sooner from RRMS to SPMS.

Why on earth neuros are so slow in adopting to that reality, talking to their patients and translating it into action for their patients is a mystery to me. Some day, they will. Changing habits is slow and onerous. Meanwhile, some patients suffer needlessly, IMO.

My wife has not had a new lesion since she got on Tysabri in 2000. She had 2 flare-ups requiring solumedrol which quickly resolved the situation.

For us, MS is simply MS. The gray area of when someone is RRMS or SPMS is more a convenient category for second-tier neurologists to use as a treatment guideline than something that would benefit their patients.

NO ONE IS AS INTERESTED IN YOUR HEALTH AND YOUR FUTURE AS YOU. INCLUDING YOUR NEUROLOGIST! If a patient is content to stay on an old med, a second-tier neuro is not going to spend time (time is money) persuading them otherwise.

Plus, pwMS, think the orals are wonderful because they are convenient. They convenient are but the problem is they often make a patient ill and they are not nearly as effective as the better DMTs.

Anyone with MS who wants to live as normal as possible for as long as possible needs to get on a highly effective DMT early and stay on a highly effective one.

Look at the lives of those who chose an aggressive DMT early and judge for yourself. There is a bunch those people here at MS WORLD. True, there are no guarantees. Some have such an aggressive form of MS that the best meds are not effective. But the reality is that the most effective meds offer, by far, the best chance for delaying, and in some cases preventing the transition from RRMS to SPMS.

Mamabug, God bless you! Thank you for all you do here; I'm sure it is just the tip of the iceberg of the beautiful person you really are! You have my heart and prayers!

[Mamabug]

Myoak -- thanks for your response. My brain formed many lesions during the first 7 years of MS. The first two, I was undiagnosed and not on anything. The next 5, I was on betaserson, which was not very effective for me and I continued to have frequent and severe flares. I wish that my neuro, at the time, would have been proactive in switching me.

Copaxone has worked well for me until recently, although, as you suggest,va newer med may have been more effective.

I guess, what you are saying, is that your wife has not exhausted her reserve capacity yet. If I use your attitude and view, I guess I have exhausted mine. Probably, then, it would be too late for Ocrevus to be effective for me. It is not designed to help with SPMS.

Thanks, also, for your kind words and your well-wishes for me.

[Myoak]

Hi Mamabug!

JMHO, but I believe you will recover much more function than you may have expected. If Copaxone is not working as well anymore, I hope you and your husband will discuss other treatment options with your doctor. If you transition to a med that slows or halts the formation of new lesions, I can't see how that would not help.

We were concerned, as most are, transitioning to a new med but it turned out to be easier than I thought possible. What a tremendous relief! I was much too apprehensive and I want to be the person I wish I had in telling me that this may go way easier than anticipated. Sure, everyone is unique. But isn't it true that often the things we fear the most ahead of time turn out to be a much smaller problem than what we anticipated? For my wife, Ocrevus has gone very, very well.

Mamabug, you are a dear! I believe in you. Shape your life as you will in God's strength, which you obviously have. Best wishes, kid!

[Mamabug]

My wife's balance has gotten noticeably better on Ocrevus.

If you transition to a med that slows or halts the formation of new lesions, I can't see how that would not help.

I am at the point where I no longer expect new flares or new lesions. The damage that occurs in my brain, at this stage of my illness, is in the old, existing lesions. I don't believe Ocrevus is designed to help at this stage.

[Myoak]

Old lesions which become active (demyelination) help define active inflammation. Ocrevus reduces active inflammation by up to 95% compared with another MS med, Rebif.

https://www.nationalmssociety.org/Ab...proves-Ocrevus

“Ocrevus significantly reduced the annualized relapse rate by up to 47% compared with Rebif over two years in a total of 1,656 people with relapsing MS. In addition, Ocrevus significantly delayed confirmed progression of disability on the EDSS scale by 40% compared with Rebif. Ocrevus also significantly reduced active inflammation observed on MRI scans by up to 95%, and total damage on MRI scans by up to 83% compared with Rebif.”

It is critically important for pwMS to understand the fact that there are DMTs such as Tysabri and Ocrevus which have been scientifically proven in rigorous trials to be far more effective in reducing active MS (which includes old lesions becoming active) than Avonex®, Betaseron®,Copaxone®, Rebif®, Extavia®, Plegridy®, Glatopa®, Gilenya®, Aubagio®, Tecfidera®.

“What does it mean when a lesion is enhancing?
If a lesion on the MRI lights up, it means that active inflammation has occurred usually within the last two to three months. Active inflammation means that myelin (the fatty sheath that insulates nerve fibers) is being damaged and/or destroyed by a person's immune cells.”

“Ocrevus also significantly reduced active inflammation observed on MRI scans by up to 95%, and total damage on MRI scans by up to 83% compared with Rebif.”

Old lesions that "light up" are enhancing on MRI, indicating active inflammation, active demyelination.

Speaking of Ocrevus, I quote this lady…

"This is a real game changer.” – Cyndi Zagieboylo, President and CEO, National MS Society

[Mamabug]

Thanks for your response. I'm glad Ocrevus is working for your wife. Everything I read, even in your link, suggests that Ocrevus is effective in RRMS and PPMS. There is no data on whether it would work for SPMS. I'm not sure what "rigorous trials" you're referring to. NMSS seems to dispute that.

Q. Will Ocrevus help people with secondary progressive MS who are no longer experiencing relapses?
A. We don’t know. So far, the clinical trials of Ocrevus have involved people with relapsing forms of MS and primary progressive MS. Results were announced as positive for the trials in these populations. There is no data yet on whether Ocrevus may be effective in those people with secondary progressive MS who are no longer experiencing relapses.

[Seasha]

Hi Mamabug and Myoak - I moved your posts from the thread "About Balance" from Carlyle https://www.msworld.org/forum/showth...-About-balance to start a different Thread here in the Ocrevus forum

Good to hear from you Myoak and so glad your wife is doing well on Ocrevus.

[Mamabug]

Good idea, Seasha

We kind of hijacked that thread. Sorry.

[lindaincolorado]

Myoak, nice to hear from you, especially that your wife is doing well on Ocrevus. I thought of switching to Ocrevus but, my neuro told me it probably would do nothing re; sx ?? I have now been on Tysabri 11 1/2 years going 56 days instead of 28 between infusion for approx 3 years. My life thought, if it ain't broke don't fix it

Mamabug, I had not had an exaserbation since my first in 1988 ?? Who knows what type of ms I have ? I believe in doing all that I can to help me and my QOL. I thank G-d daily for my attitude, Tysabri and #1 for G-d ! By the way since Ty I have had no new or enhancing lesions (MRI) and after the 1st 6 months a lot of the old lesions either became smaller or were gone !!

[Myoak]

Seasha, thank you for your kind expressions! It can be time consuming during a busy day to post here, however, so many pwMS suffer needlessly by staying on older, less effective MS meds that it is important for those who are doing well, or are caregivers for those who are doing well on newer, more effective meds to speak up, especially with personal testimony.

Linda, it is great that you continue doing so well on Tysabri! I am thrilled for you! Don't you wish it had been available sooner?! As you know I am a big fan of Tysabri because it halted my wife's MS dead in its tracks. She still leads exercise classes and Yoga at the YMCA 4 days a week as she has for years. Tysabri changed her life from one where she was having severe flares and disability to one where most would not even know she has MS.

At one point, before my wife went on dose extension (at my very strong urging), she had received more infusions of Tysabri than anyone in the world, according to her neurologist, Dr. Rossman, Director at the MIND MS center in Farmington Hills MI.

She was an early adopter in going 8 weeks between infusions as a way to diminish the risk of PML. Because of there are so few ways to decrease the risk of PML, I pounded the table for a full year before her neuro finally agreed to go to 8 weeks between doses. Obviously, dose extension has worked wonderfully to diminish the risk of PML. So far, NO ONE taking Tysabri at 5,6,7,or 8 week intervals has ever been reported getting PML. Not one!

My wife was on Tysabri from 2000 (she was on it in trials) until 2016 except for the year it was off market. She tested positive for the JC virus from the very first test. Her titers fluctuated but were always high, being in the 3's and 4's. That is why we were so adamant on extending time between doses as a possible way to reduce PML risk.

Years ago, when I read the Swedish study that lower weight individuals got PML at a higher rate than heavier ones, it made sense to many people that a lower concentration of Tysabri might allow better immune surveillance against the JC virus which, as you know Linda, can cause PML, primarily in those immunocompromised. The theory that a lower concentration of Tysabri de-risks for PML, has proven valid, it appears. If someone weighs more, they have less Tysabri concentration and less PML risk, the Swedish study indicated as much; and if you extend time between doses you have less Tysabri concentration and less PML risk, it appears.

The decision to switch from Tysabri to Ocrevus was one my wife made. We were driving several hours and staying overnight before each Tysabri infusion and since the two meds are nearly equally effective she preferred to switch and make the trip only 2 times a year on Ocrevus. She can tell little difference between the two meds. There has been no change in her MRIs... no new lesions and no enhancing old lesions. Also, no clinical changes such as walking, etc...EXCEPT that she says her balance is noticeably better. Her Yoga class is where she noticed the balance improvement.

It is always a bit tricky presenting how well someone is doing because many on the same meds do not do as well. MS can be terrible in spite of the best meds. However, those who do well must speak up and share their testimony, otherwise, pwMS too easily fall into the trap of thinking there isn't much difference in the MS meds. Or, they think, 'MS is now my lot in life and I must accept it'. O HELL NO!!! Don't accept it! If someone is experiencing old lesions enhancing on MRI or new lesions while taking one of the older MS meds please know there are meds like Tysabri and Ocrevus which are highly effective in preventing the kind of active inflammation seen in enhancing lesions!

Enhancing lesions, whether new or old indicate active demyelination. Tysabri and Ocrevus are both tremendously effective in stopping that.

Some pwMS on older meds seem unconvinced that a more effective med is possible and presently available. Reason follows the Will (says Schopenhauer). It isn't a matter of scientific facts or truth not being present. It is a matter of will not being present. They will not. They refuse, for whatever personal psychological reasons to adjust to the truth. A notable scientist said this centuries ago... "You cannot teach a man anything; you can only help him to find it within himself." -Galileo Galilei.

btw, Pope John Paul II did finally apologize to Galileo in 1992, 350 years after the Church threatened to torture him if he didn't change his science. I suppose we all can be slow to recognize the validity of new science. For our purposes, I'm talking about the newer MS meds as new science.

When it comes to MS meds, many early adopters have excelled, generally and comparatively speaking. Those who adopt later generally do well, also. But broadly speaking, those who generally don't do as well, comparatively, are those who ignore new science and new meds.

May we always keep an open mind and an open heart. That is how we make progress and help those who may be seeking help.

Best to all!

[dcancellarich]

Myoak,

How many Ocrevus infusions has your wife had?
My biggest fear of this medication is the side effects after the infusion. i have heard many say they were very tired and weak for weeks after the infusion. That is not something that I can afford in my life. I have a full time job and an 8 year old child. Did you wife experience any side effects?

[Myoak]

Hello D,

My wife just peeked in so I asked her to recount her experience with Ocrevus so I could pass it along to you.

She received the first dose of Ocrevus in the fall of last year. The protocol is to receive 1/2 of the dose (300mg) at the first infusion and two weeks later receive the other half (another 300mg).

Before the first infusion the facility pre-medicates with Benadryl and a steroid to help tolerate the infusion better. Both were given through the IV. My wife was drowsy during the first infusion and during the trip home. There is no way she could have driven or have done anything but take it easy the remainder of that day. But by the next morning she was fine and ready to lead her exercise class.

Two weeks later, she went for the second half, the remaining 300mg. The identical protocol was used. She was less drowsy during and after the second infusion than the first infusion but she could not have driven. But again, she was back to feeling normal the next morning and did her regular routine.

Six months later, she received the full, regular 600mg dose at one infusion. The pre-med protocol remained the same as the first dose. She was less drowsy this time than the first two infusions and was even alert enough to have driven, HOWEVER, it would have been extremely foolish to take any chance of endangering lives on the highway, so I drove. She was not drowsy after that infusion and the next day she was just fine, too.

It is our understanding that her response has been fairly typical, according to nurses at the facility.

Ms. D, as busy as you are, you likely will have to make accommodations for the inconvenience of treatment whether it is Ocrevus or another DMT. Taking Ocrevus, you definitely will have to arrange for transportation the day of your infusions. May I offer my thoughts?

First, if you don't work on Saturday, schedule your infusions on Friday so you will have two days to recoup in case you need them.

If you have to work the next day after an infusion explain that CLEARLY to your neuro. He/she will have something to offer you to boost your energy because you need to work. They will understand. Please ask for something. Just say you have no option, you have to work; that should suffice to get a short-term script helping you do just that.

May I ask if you on a DMT, presently?

IMO, most DMT's for MS have very poor effectiveness. If someone has RRMS they usually remit whether they are on a DMT, or not. After all, it is called relapsing-remitting MS. Unfortunately, when someone takes one of the poorly effective DMT's and their MS remits they may believe it is due to the DMT when the truth is they very, very likely would have remitted anyway by taking nothing. As a result they sometimes get stuck in a treatment which works for only a few people out of a hundred.

Let me provide an example. Copaxone reduces annual relapse rate by about 28% ( https://www.ncbi.nlm.nih.gov/pubmed/12926839).

Let's be overly generous and say that number is 33%, or about one third.

Here is how that 33% reduction in annual relapse rate is calculated... For example, take 100 people with MS (pwMS)and give them nothing and 21 have a relapse in one year.

Take another 100 pwMS and give them Copaxone and 14 have a relapse in one year. 14 out of a hundred is a 33% reduction compared to 21. That is exactly what a 33% reduction in annual relapse rate is. In our example, only 7 out of a hundred benefitted from Copaxone in reducing the annual relapse rate. That example may be surprising but it is pretty darn accurate. 93 out of a 100 would not have experienced a difference in the reduction of the annual relapse rate. Please understand that for 93 out of 100 Copaxone does nothing to reduce the annual relapse rate. Anyone who tells you otherwise should go back, read the Copaxone trial data, put it in layman terms and post it in this forum to inform me where exactly I am incorrect, so we can all learn from it.

So, in our example, 7 out of a hundred got a benefit of reduction in annual relapse rate but the other 93 on Copaxone get side effects (which are sometimes awful) without getting any such benefit. When you compare MS meds, some are better than Copaxone but not by much. And all have unwanted side effects.

IMO, you have to look at the effectiveness of Tysabri, Ocrevus or stem cell transplant to see a huge benefit over other DMTs. Plus, if PML is de-risked with Tysabri (as it apparently can be by extending time between doses to 5,6,7 or 8 weeks rather than the old standard of infusing every 4 weeks)), I have not heard as many people on Tysabri or Ocrevus complaining of side effects as I have heard with other DMTs.

Yes, I realize people have differing opinions, and that is fine. But my wife will soon turn 64. She was diagnosed in 1982. She has been running up and down the stairs all day today doing chores. She often beats me playing ping-pong. In many cases, that is what the more effective meds can do for pwMS. Not always, but often, as many people on those meds can tell you.

btw, I want to correct something I said way earlier in this thread. I said she had been on Tysabri since 2000. But her first dose was March of 2002.

All DMTs have risk. But IMO, the biggest risk is in not treating MS as effectively as possible. There is risk in every MS treatment; but the biggest, most frightening risk, to me, is in not treating MS as effectively as possible.

God Bless you, D!!!!! You are so blessed to be young and have effective meds available, if you so choose. Best to you!

[Mamabug]

Myoak, we are all different.

Betaserson was not effective for me. I had one or two severe flares per year when on betaserson. They usually required hospitalization.

I blame my progression on not starting on any med soon enough (because I was not diagnosed for almost 2 years). And on staying on betaserson for five years when it was clearly not effective.

On copaxone, I had 3 minor flares and no hospitalizations in 8 years. I credit my current doctor for making that med change. It reduced my relapse rate from 1 or 2 per year to only one every two or three years. That's 75% or more reduction in flares. Not 25%.

It also reduced severity of flares to such an incredible extent, and improved my quality of life so much that I don't begin to know how to measure it.

While it is certainly possible that Ocrevus (or tysabri) could have had better results than copaxone, it is not an option for me to go back in time. And, myoak, your post minimizes, or even ignores or dismisses, the benefits of the older meds. For me, it changed my life.

I understand your appreciation for the change ocrevus made in your wife's condition. I simply ask that you don't dismiss the improvements copaxone made in mine.