Last reply 7 months ago
Ocrevus or Tysabri? Newbie decisions!

Hi everyone!
Struggling to make a decision between Ocrevus or Tysabri.
I’m 26 and had my first symptoms in February this year with a further episode in June. Diagnosed in July and although I was convinced I had MS anyway I was and still am fairly devastated that it is real. I’ve since had a repeat MRI with a new lesion and am getting over a course of IV Methylpred at the moment. I was offered Ocrevus straight away but when the new lesion appeared my nurse has since implied Tysabri. Pending my JCV results I could potentially start Tysabri in a few weeks or the other option is to join the waiting list and start Ocrevus in November. Is Ocrevus worth the wait or would I be stupid to put myself at risk by waiting? Tysabri is also once a month as opposed to Ocrevus every 6 months. It’s a lot of hospital time although I’m pretty much in hospital all the time anyway as I’m a nurse! So many decisions! Any input would be greatly appreciated X

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


itsmewithms
7 months ago

As a nurse you are in a great place with more medical training to understand the various drugs than most of us are. I’m an accountant so I just see the dollar signs and all the money behind all this…makes me a bit cynical ;-/

But one of the things my Dr considered with my first treatment was how fast the “load” was or basically how long I had to be on it for it to have impact. Because the periods between my relapses was pretty long and I was pretty stable he put me on copaxone as it had a slower load period but was just as effective as the other option back 15 years ago. You could also stop it pretty quickly and start something else if it didn’t work…which he also pointed out was something to consider so you didn’t have to have a big break of no DMT when you were in a bad spot.

You have RRMS? There are more options than just these two but your Dr must feel they are the best treatments for you or that is just their standard recommendation? I was on Copaxone my first 11 years with pretty good success (4 or 5 relapses over that time) and then Rebif for the last 3 with no new lesions. That sounds great but as women approach 55 yrs old (don’t remind me…I am getting that old ;-0 ) the chance of a relapse drops significantly and the risk changes instead to possible SPMS and then the DMT he is recommending is Ocrevus.

That is why I ask…what is their “back-up” plan if these two don’t work…although new options are always coming up now…so that is good 😉 but how would you pull off the current treatment and move to the next, etc. these are some questions I would ask. Also what do they plan to do in the event of a relapse? I’ve had strong prednisone treatments that pop me out of a relapse within a couple of days.

Just some questions I would ask. With your medical training I’m sure your mind is spinning with them 😉 good luck


georgie92
7 months ago

@itsmewithms Thank you, you’ve given me a lot to think about. Yes it’s highly active RRMS from what I’m told and because there was only 4 months between relapses they want to act aggressively.
Apart from the Consultant Neurologist giving me the diagnosis it’s been all nurse led and you’ve made me think perhaps it’s a good idea to see the neurologist again before making a final decision. I definitely want a back up plan 😂
I had 2 days of IV steroids a fortnight ago which turned me into an emotional wreck and blurred my vision. The side effects are slowly wearing off thankfully! Residually I don’t feel any better but have been told it can take up to 6 weeks to feel any effect.
It’s great to hear of your success with other medications and hopefully your relapses wernt too bad. Sounds like you and your doctor have a solid plan!
As for being a nurse, I know knowledge is key but sometimes I think if I knew less would it be easier, ignorance can be bliss! Too late for me now I guess 😂


wjgregg
7 months ago

Dear @georgie92,

I had two relapses in 2017. The first in February and the second in June. The second put me in hospital for three weeks. I had an M.R.I. scan in February, then another in June at the hospital. When I finally got a neurologist who specialised in Multiple Sclerosis, he told me that I had “rapidly advancing” R.R.M.S. He advised Tysabri, and talked me through the pros and cons. I didn’t hesitate. I have recently had my 23rd infusion and have been, touch wood, relapse free.

You may well be limited in the short term from having any more steroids if you have two doses within the year (@stumbler is the expert on that, though, so don’t necessarily take my word for it). Obviously, you can start Tysabri even if you are JC+. You would be carefully monitored.

For my own part, the second relapse did a lot of damage. I was desperate to get on Tysabri, and ward off any more of them.

Good luck with whatever you chose. We all wish you well.

All the best.

Jon


itsmewithms
7 months ago

@georgie92 Sounds like you tried the IV steroids for two days and it really messed with you. I have had great success with it so that proves that the impact will be very different for different people. My husband has UC and was given predisone pills to help with is flares and he couldn’t stand them and he was given a fraction of the dose I was getting. It isn’t a universal cure for everything! don’t we wish that existed!

I know that the wife if a colleague is on Tysabri and really likes it. As I said I was on copaxone for 11 years and now Rebif for 3. I didn’t understand why she put up with the bother of going in for a transfusion and all that disruption when she could just take a shot at home. The testimonies in this group and online truly show that different treatments work for different people.

Hopefully over time they understand the individual complexities of this disease and our treatment is customized for the patient. Hopefully I learn more about where treatment is heading and benefit from the most recent technology when I go to Mayo. I like my current Neuro and he is in one of the best clinics in our local area but welcome new ideas and approaches.

I think it is good to understand the disease and take an active role in managing it but I have no medical background or training and think that I can lock myself in “analysis paralysis” where I am so locked up I don’t do anything. That is when I seek out others like in this group or Drs. Also in my family there is a lot of breast cancer. When my step-mom got it she just put her hands in the air and prayed a lot. She had no idea what was going on with her treatment and just put her faith in her Drs. Her disease ran it’s course and she died. Several years after that my sister got breast cancer. She was a fighter and researched her condition and treatment to all ends. This likely extended how long she lived and she made the most of that time. She visited her daughter and grandchildren in Hawaii several times a year, went to places on her bucket list (Grand Canyon and the Florida Keys) and took her grandchildren to Disney World. When her fight was over she also left us. But I like to think I would have her spunk and spirit.

Now I realize I am on a fight of my own but with a different disease. I’m trying to up my knowledge and get things done. I am only 54 (similar age to when my sister was fighting her battle) and there is much more I want to get done. I hope to work a couple more years to lock down my financial needs and then I can knock off some of my bucket list items.


stumbler
7 months ago

Hi @georgie92 ,

A diagnosis of MS, whether it’s expected or not, is still a huge shock. You’ll need time to process the information, probably months. Just be patient as you go through several emotional phases, similar to that associated with a bereavement.

Yes, you have been advised correctly about Steroids. Primarily, they will be working with your body over 6 – 8 weeks, to help you recover. You just have to ensure that you get rest and relaxation to allow this recovery to happen. Secondly, it is recommended that you have no more than two courses of High Dosage Steroids, to avoid causing other problems like Osteoporosis.

Tysabri and Ocrevus are both two of the most efficacious Disease Modifying Therapies. Tysabri, as you know, is an ongoing commitment. Your JCV status is of questionable relevance as your status can change. As mentioned, the risk of PML is closely monitored, to ensure the risk is maintained at reasonable levels. The Tysabri will be stopped, if the risk becomes too high, which does give rise to possible “rebound” activity.

Tysabri is a maintenance therapy, whilst Ocrevus is one of the latest Immune Reconstituon Therapies, which aims to remove the MS from your Immune system.


georgie92
7 months ago

@wjgregg Hello and thanks for sharing your story. Hearing everyone’s accounts puts things into perspective. I don’t think I could deal with a third relapse this year, and I’ll know they will come eventually but it would be great to be able to get over one before getting another. So Tysabri remains a strong contender. It’s such a commitment but I guess I’m married to MS now! I really need a sit down my specialist before I choose I think.

@itsmewithms The steroids most definitely messed with me. It was like a bipolar rollercoaster 😂 the visual disturbance was disheartening as I already have lots of floaters from optic neuritis to annoy me. Fun times! Sorry to hear about your step mum and sister. I would like to have the same motivation as your sister, had great intentions of seeing a lot of the world next year with my partnet. Dunno if this will be possible with monthly Tysabri though 😭 get that bucket list started, I need all the inspiration I can get 🙂

@stumbler Thank you so much for your advice and input. Hopefully after 8 weeks I will notice a difference, it doesn’t have to be a big one just something to show the steroids worth and give a bit of reassurance. I feel lots of people are crying out to get Ocrevus though from what I’ve read in places and just don’t want to regret making the wrong choice and have the right one taken away. I want the latest new and shiny thing like everyone else but need it to be practical and purposeful too. I know I’m asking for too much though! Doesn’t help that I’ve never been a good decision maker either 😂 oh and I have to say, I love your username 🙂 Very apt!

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.