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Second Infusion two weeks away, I feel like death? Any other

Posted: Wed Oct 03, 2018 11:57 am
by vender
Hello I get my next infusion in 10 days it will be my second infusion and was wondering does anyone else feel like complete shit? Yeah for the past 2 1/2 months I’ve been feeling worse than never. Is the second infusion the trick? Anyone else experiencing feeling horrible before their second infusion? PRMS.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 17, 2018 9:32 am
by Anunymouse
No real changes from 1 to 2 to 3. I'm due for 4 now.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 17, 2018 11:58 am
by vender
Anunymouse wrote:No real changes from 1 to 2 to 3. I'm due for 4 now.
So why continue? I got my second infusion no change at all so I am done. The only thing that seems to help me is Solu-Medrol infusion. Just waiting to get it.
There should be a money back guarantee like everything else you buy in life if it doesn't work you get your money back. Total bullshit Ocrevus!!

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 17, 2018 2:40 pm
by ElliotB
Typically these types of drugs take some time to work and perhaps 6 months to a year is the best frame to evaluate the effectiveness properly. From what I understand the 2nd infusion comes not too long after the 1st, just a few weeks. Have you had the opportunity to speak with others taking it to find out about their experiences?



@ Anunymouse, the 4th infusion would be around the one year mark and typically part of evaluating the effectiveness would be a MRI. Have you had a recent MRI done? Have you had the opportunity to speak with others taking it to find out about their experiences?

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 17, 2018 6:28 pm
by Anunymouse
Round 1 is split into 2, 1/2 dose each time 2 at 6 months. Round 3 would be at 12 months, so 4 yaken at 18mo will take me through the 2nd year.

My mris have been unremarkable since the beginning and have stayed that way regardless of medicated or not. I'm due for another but I'm not too concerned. No med appears to have the ability to make things better, at best they slow things down. I didn't expect anything else when j started. Assuming the destination is the same, all you can shoot for is making it as long a trip as possible, which is why I'm continuuing.

I've actually started coimbra with hope for actual improvement.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 17, 2018 7:51 pm
by NHE
Compared to Rebif, there isn't much difference in disability progression in RRMS until about 1.5 years into treatment with Ocrevus.





Compared to placebo, there really doesn't appear to be much difference at all in PPMS. Am I missing something?




Note: The data plots are from the prescribing information linked at the top of the forum.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 31, 2018 4:33 am
by Kheuer
@ anonymouse

Ocrevus has been clinically shown to stop progression, and in emerging data, after 4+ years it has been shown to actually help some patients recover LOST function, physical and cognitive.

Google it

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Oct 31, 2018 6:38 am
by vender
Sorry for disagreeing with you but the studies conducted by Ocrevus are some of the worst data collection statistics ever. Don't believe what the drug companies tell you. There are studies are complete garbage I worked in statistical process control for 10 years so I know the stats

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Fri Nov 02, 2018 2:56 am
by Jimpsull
We have a Nuero-degenerative disorder. We’re expected to get worse. Evidence is that Ocrevus slows our decline.

I feel like crap and am walking worse in spite of no new damage on MRI. Been on O about a year. Second full infusion next week.

Patients who saw improvement saw it about 6-24 months into the trial.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Wed Nov 14, 2018 9:47 am
by MSMandee
I had the first two half infusions in April. As I'm SPMS and haven't had active lesions in 10 years, I wasn't expecting much and unfortunately, it turned out I was right. Fatigue got even worse and I am already bedridden from the fatigue alone. Walking continued to decline: I still can only take a few steps with bilateral support. And it activated my colitis which had been in remission. Also, I've had one cold after another. It's been taking my body days to cue into the colds, they are worse and last forever. And any fever causes me to completely lose use of my legs. Not being able to even turn over in bed, no matter how temporary has been terrifying. The way they manipulated the data, by including more early PPMS'ers with active lesions, just to get approval wasn't right. Rituxan trials have not really been positive for SPMS or PPMS. There was no reason Ocrevus data should have been different. So, I skipped further doses. But, on average, it takes 72 weeks for B-cells to completely reconstitute. So, I'm in purgatory.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Fri Nov 23, 2018 12:28 pm
by Anunymouse
Infused again last week. Fairly uneventful. Neuro put me on meds for a week before and after. Im one of the lucky few that had gotten a rash with every infusion, originating around my testicles and ears. Lots of fun to be had. Supposedly the rashes lessen with each infusion. In any case either pretreating or just time worked, no rash.

Im exhausted for the last few days though, feel like I'm fighting a bug. Whether that's it or i just feel like ass because i trashed my immune system. Or i trashed my immune system and i caught a bug because of it...

I seem to recall going through this before so im guessing its die off. I should track it closer i guess. I can't v wait for it to stop regardless.

I was hoping for a miracle when i started, not seeing that result. But it's not really advertised as such. Tbh i think I've seen more of an improvement on coimbra than on ocrevus, but I'm going to continue both.

Re: Second Infusion two weeks away, I feel like death? Any o

Posted: Fri Nov 23, 2018 4:50 pm
by ElliotB
Have you had a MRI recently? If so, what were the results?