General Question for those who are on Ocrevus or thinking of going on it.

[Fishytrout]

I am thinking of going on Ocrevus. I have SPMS and my neuro wants me to take it. I looked up info about it and its Side Effects and the diseases (Hep B, Herpes, Cancer, PML) it can cause. I am tying to figure out if I want to risk these things. I know that there are many HERE who have gone on it and was hoping to get some feedback from those that decided to go on it and those who decided against it. I was all for it until I kept reading (from reputable sources). Now I am leary.

PLEASE HELP

[REG53]

Hello Fishytrout,

I have taken my first two half doses and first full dose, I wil be taking my 2nd full dose in July.
I haven't had any improvements in my sx's good or bad but I haven't had a relapse and for that I am happy.

You are right about the side affects being scary. I had to come off Tysabri because I was JCV+ then I went on Tec. but I started showing some progression per MRI. My dr. wanted me to go on ocrevus.

The side effects are scary but not being on any med to slow progression, I quess scares me more.

I do say a prayer and hold out my arm.

I hope whatever you decide works well for you.

[Fishytrout]

Hello Fishytrout,

....I hope whatever you decide works well for you.

REG53 Thank you for replying to my thread! I hope it works for you too :-)

[Myoak]

Hello Fishytrout,


If I may comment... JMHO, but I believe there is a very good chance of Ocrevus slowing MS no matter if the MS is RRMS, SPMS, or PPMS. Yes, it is more effective in RRMS but researchers are gradually coming to view MS as one disease and if SPMS and PPMS were treated long enough, (for several years) a definite benefit would be demonstrated with DMTs effective in RRMS.


When Tysabri was trialed in SPMS it did not meet clinical endpoints, however, a definite benefit was demonstrated in the preservation of upper limb function. Since that aspect was not among the chosen endpoints the trial was called a failure. But the best (IMO) MS researchers like those at Bart's in London believe if SPMS trials lasted longer the highly effective DMTs like Tysabri and Ocrevus would demonstrate benefits in progressive forms of MS.


If someone is not ambulatory then arm function is even more critical, so yes, whatever function we can preserve is extremely important.


Ocrevus is not without risk. Neither is MS. So each individual must make a personal judgement if the risk of a serious adverse event with Ocrevus is outweighed by the risk of worsening MS presents for that person.

For me, the risk of a serious adverse event with Ocrevus is not as great as the risk of worsening MS. That said, I do not have MS but am only offering my opinion.


Blessings to you!

[oceanpride]

Hello fishy trout. I’m scheduled for first infusion June 20th. I’m almost scared to death. I’m PPMS and figure I’m an unlucky fellow to begin with, so my chances with this drug could be unlucky as well MS has me scared to death as well so I just think damn’d if I do or damn’d if I don’t. For me it’s been no cure, no treatment, nothing except symptom management for 14 years since dx. This may be the only thing that comes up in my lifetime.

I’ve had a battle though. They said your 59 and the age cutoff is 55. Then they said the only insurance plan I’m on ( blue cross ) won’t cover it. Then finally my Nero submitted my form again and it’s all set. I figured that if it doesn’t agree with me or looks like I’m sliding on it I’ll just have to quit taking it. And eventually my body should return to normal. I mean it’s definitely not normal right now. I’ve just been lucky to keep pushing and pushing to not let this condition take me.

I’ve noticeable symptoms , no hiding them and a slow decline only just a little quicker than old age it’s self. I think I would like to be active 25% longer. I’m trying it fingers crossed. The only info I have on this stuff is right here on this foram. Really bad timing with lobster season full swing but their just going to have to get by without me for a bit.

Good luck with your decision

[Temagami]

I´ve now had four infusions and that´s counting the split doses as two. No new lesions and no relapses whereas before I was having 2 relapses per year and new lesions even with copaxone and then gilenya. Cognitive issues are still happening and new deficits occur.

Reactions:
infusion 1: slight tingling itching on scalp near the end of infusion
infusion 2: nothing
infusion 3: nothing
infusion 4: got home very tired, nausea, headache, diarrhea for a few days, then all of that cleared
about 2 months after that infusion I got my first plantars wart ever (caused by HPV). Dr. google makes a connection between a compromised immune system and the wart. Treated with over the counter salicylic acid, tea tree oil and duct tape.

Regarding the cancer risk, I go for mammograms and ultrasounds spread out in time to satisfy insurance timelines, but the spread results in more frequent checking.

Am JCV+ and this seems the best and only option for me. I do not regret taking it. Just wish I knew my personal B cell count as if I´m a slow rebounder, I could have the infusions farther apart in time. When the clinical trial is over I allowed access to my data and will look for that.

[Fishytrout]

myoak, oceanpride & Temagami,

Thank you all for your responses. I read each of them with care. I really appreciate you taking time to reply.

[IAmStrength]

Ocrevus

Hello fishy trout. I’m scheduled for first infusion June 20th. I’m almost scared to death. I’m PPMS and figure I’m an unlucky fellow to begin with, so my chances with this drug could be unlucky as well MS has me scared to death as well so I just think damn’d if I do or damn’d if I don’t. For me it’s been no cure, no treatment, nothing except symptom management for 14 years since dx. This may be the only thing that comes up in my lifetime.

I’ve had a battle though. They said your 59 and the age cutoff is 55. Then they said the only insurance plan I’m on ( blue cross ) won’t cover it. Then finally my Nero submitted my form again and it’s all set. I figured that if it doesn’t agree with me or looks like I’m sliding on it I’ll just have to quit taking it. And eventually my body should return to normal. I mean it’s definitely not normal right now. I’ve just been lucky to keep pushing and pushing to not let this condition take me.

I’ve noticeable symptoms , no hiding them and a slow decline only just a little quicker than old age it’s self. I think I would like to be active 25% longer. I’m trying it fingers crossed. The only info I have on this stuff is right here on this foram. Really bad timing with lobster season full swing but their just going to have to get by without me for a bit.

Good luck with your decision

I just had my first infusion last week and I have had absolutely no side effects at all! They have to post everything that could go wrong for their own liability but I've researched it for months now and I definitely feel that the positives outweigh the negatives by a lot!

[oceanpride]

That is very encouraging to hear. Thank you for writing. I am scared to death , thinking that I’m going to be the statistic some how. Any way unless something really crazy happens , I’m all committed. Maybe it will help keep the monster at bay. Hoping just not for me but for everybody.

[MisterMan]

I am also starting Ocrevus soon, just waiting on insurance preauthorization. Switching from Plegridy.

After research & talking to Neuro I am not too concerned about the side effects at this point. Plegridy has its own side effects which in part are driving my switch. For the trouble I’d rather be on a more effective therapy.

If it goes as planned I could have my first half dose in early July, Neuro wants my WBCs to recover a bit first as they are low due to the interferon therapy (has been an issue since soon after starting Rebif 13 years ago)

Good luck!

[Fishytrout]

MANY THANKS to all who posted here. I really appreciate your input. I went to the Neuro today and told her of my apprehension. She spent an hour with me and in the end I decided to participate in a Clinical Research Study. It is with a new version of Tecfidera. It is Monofidera and I will have the option to also participate in an Open Label arm of the Study. I am much more comfortable with THIS. I am not saying I will never take Ocrevus, but at this time I am not. I wish all of you the BEST.

[Fishytrout]

Correction. I will be taking a study drug that will be either Dimethyl Fumarate or Monomethyl Fumarate, NOT Monofidera (stupid brain)

[REG53]

Best of luck Fistytrout.

[Avengr13]

30 years but hopeful

I have had ms since October of 1986. I was diagnosed with RRMS but feel that I might proceed to the next stage. My plan is to go down fighting so I am watching my diet and doing physical therapy and working with a trainer at the gym. It seems to be helping me.

Over the years I have had all the standard exacerbation about every 2 years.

I have used many dmt’s as well including;
Avonex, since it was 1st introduced
Rebif
Aubagio
Lemtrada (almost, but I backed out at the last minute)

&And most recently my 1st infusion with Ocrevus

I feel like I am at the end of the DMT’s as I am 55 and Medicare dmay not cover me at some point.

My general question is this
When they compare Ocrevus to another drug it is always Rebif.
I could not tolerate Rebif and so far Ocrevus seems to be working.

A lot of background to let you know some info about my journey.

why is Ocrevus compared to only Rebif and not the other drugss?
Even though ocrevus was a slight inprovement to Rituxan, that info is not mentioned

Thanks for reading.