Ocrevus vs Tysabri/ iv steroids - My MSAA Community

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Ocrevus vs Tysabri/ iv steroids

Disneycde profile image
14 Replies

I am in the midst of a relapse☹️

Am starting IV steroids today. How

Have any of

You been treated for a relapse ?? Oral bs IV and how many days??

My next drug will likely be Ocrevus or Tysabri. Have any of you been on both?? Am looking at what side effects that others have experienced and which they liked better. Am trying to weigh the risks/benefits. Thanks

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Disneycde profile image
Disneycde
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14 Replies
Kenu profile image
Kenu

Been a long time since steroids but use to get 1000mg day iv for 3-5days then oral to taper off. I was on Tysabri for seven years and did great 👍 The reason I stopped was I got stage four throat cancer ♋️ and they took me off. Been on Aubiago for last three years and doing well. Good luck on your decision 👍🙏😉 Ken 🐾🐾

Disneycde profile image
Disneycde in reply to Kenu

Thanks. Good luck with everything for you😊

kdali profile image
kdali

Sorry for your relapse. I have had the 5 day course of steroids and felt better but the mri after showed an enhancing lesion, so I’m not likely to take that again. I’ve had one gram of IV after surgery to prevent a relapse and that was an awesome month! Never had the standard 3 days of it, or the million pills that would be equivalent.

I got worked up to start tysabri but was unable to take it, so ocrevus was my only real choice.

GL!

Jackjosh profile image
Jackjosh

I'm on ocrevus I was scared to do tysabri because of PML but ocrevus is going good for me you have to get the JC virus test before you start tysabri I hope all goes well I don't really know when I'm in a relapse

JTZES profile image
JTZES

If I start feeling an exacerbation coming on my nurerolgist will run an mri but if my symptoms are too severe she will directly put me on steroids for 4 days. The steroids are used to reduce the swelling around the exacerbation. This will not necessarily stop the exacerbation but can confuse the immune system and helps the exacerbation from getting worse. After the steroids she'll run the MRI to see what was affectived.

In my opinion Tysabri and Ocrevus are the 2 most effective DMT'S. I am JVC positive so I can't take the Tysabri.

Tysabri has a 99% rating at preventing relapses.

bpriddle profile image
bpriddle

I have been on Tysabri for two years. I have had no new lesions after starting. No side affects. I would highly recommend it

KPG0419 profile image
KPG0419

I have only been on tecfidera and tysabri-I am currently on tysabri and it’s been get with me not having any relapses I have only been getting it for 4 months-but I have the worst migraines that last about 2-3 days and I mean bedridden migraines!! I had relapses with tecfidera so much!! I had to get on something else!!! You may not have these migraines when you take tysabri it affects everyone differently. GOOD LUCK!!!

Corran731 profile image
Corran731

I’ve had both 3 and 5 day IV steroid runs. I didn’t notice any advantage to the longer 5 day course. What surprised me, other than after my first first relapse I’ve had the best recovery with just the oral steroids. It was also nice to not go in for infusions.

I’m on Ocrevus and it’s been good. I’m JCV+ so I couldn’t take Tysabri.

anaishunter profile image
anaishunter

I've been on Ocrevus and it stopped ms progression for now (no new or active lesion at MRI). No new symptoms. I like that it's every 6 months (or more in my case).

I'd go for the most aggressive treatment your body can take.

Fattius profile image
Fattius

I am currently on tysabri infusions and going through a small relapse. I've tried several medications now and it seems like there is no sure fire options. But tysabri has little side effects for me other than sapping all of my energy for a day or 2.

Ak333 profile image
Ak333

Unfortunately I had an awful experience with Tysabri... it was my second drug after Gilenya. I had 5 infusions and this drug caused me to become so unbelievably depressed that I was almost suicidal! I’m not kidding. I have been on antidepressants well before MS and never had an experience quite like it. It was so scary. Once I figured out what was happening I stopped it and have been off of MS meds since ( 3 years). I’ve been treating myself with strict MS diet and supplements and stress reduction. I was even fortunate enough to relocate to a cooler, dryer state out west which has helped so much.

I’ve heard Tysabri works miracles for some but my experience with both DMT’s made me feel much worse. Good luck to you!

twooldcrows profile image
twooldcrows

sorry about this bs that the monster it taking hits at you ...your strong and will keep fighting this ...good luck with what ever you decide to try ...prayers...

rjoneslaw profile image
rjoneslaw

For a relapse I have done both the pill and iv the benefit is the same

Im currently on O I have seen improvement for myself I was never on Tysabri.

I have not had any risk

themswire profile image
themswire

I was on Tysabri for about 7 years, until my titer score got to the level where PML could be a concern. Note, being JCV+, as I am, doesn't automatically disqualify yu from Tysabri. In fact, the most recent research shows that infusions every 6 or 8 weeks, rather than 4, significantly lowers the concerns about PML.

Anyway, while I was on it I had no flares and I think my progression was slowed. I also had NO side effects. After my titer score became high I switched to Aubagio and then to Lemtrada. No side effects on Aubagio either. On Lemtrada I had a roller coaster ride of severe fatigue at first. Now I'm almost 2.5 years post Round 2 and doing well. themswire.com/my-lemtrada-j...

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