Waiting for Ocrevus Treatment to be approved for administering at Ochsner Hospital

[Gods_Girl]

Hi. I was recently diagnosed with MS in April. I also have Sjogren's Syndrome, so my doctor and I agreed that Ocrevus would be the best treatment for both, as it targets the B cells. So I had all my bloodwork done a month ago, but was then told that we are waiting for "the higher up executives" at Ochsner to approve Ocrevus as a new treatment in their facility. Is anyone else having this issue? I've left messages at the executive office twice, but still no call back. I'm really getting frustrated...suffering while waiting on them. What could be the hold up? Thanks for listening...blessings to you all.

[cnichols]

Hope they work out details. I start Thursday at Rush in .Chicago.

[Gods_Girl in reply to cnichols]

Cool... I'm glad your all set up to get treated. Would you please write back to me after your infusion, and let me know if you had any reactions to it?

[cnichols in reply to Gods_Girl]

Sure, not expecting any, I have done 2 full rounds of Rituxan.

[Gods_Girl in reply to cnichols]

Oh ok. Been working well for you? May I ask...do you have pain with your MS? I have a great deal of pain. Like I'm being squeezed in a vice grip, also lots of stabbing back pain where lesion is, and my legs feel like they're encased in cement.

[cnichols in reply to Gods_Girl]

I just started getting bone pain about 5 months ago, waiting on my medical marijuana card for that. Rituxan works great for me, we started it when I was in hospital last summer, had lost everything from waist down. They were advising me to find a nursing home. Proved them wrong. Live by myself with my cat. My siblings help with some stuff but do most on my own. This has been best drug for me.

[WAshingtongirl in reply to cnichols]

Wishing you the best tomorrow, cnichols . 💕

[cnichols in reply to WAshingtongirl]

Thanks!

[Gods_Girl]

Good for you, cnichols

[Gods_Girl]

Sorry that went through before I was done typing. I'm so glad you are able to live on your own. Thanks for the responses, and may God bless you, your family, and your sweet cat! 😊

[dianekjs]

Hi Gods_Girl , I had my first infusion of Ocrevus last Thursday and did have an infusion reaction but it was dealt with quickly by stopping for 40 minutes and adding more Benadryl to my IV. The infusion went smoothly when they restarted, although I was pretty out of it from the Benadryl. I actually haven't been feeling very well since, but was warned that some people have early side effects and it can take time to see benefits. I've heard from quite a few people who had no issues so don't let my experience concern you too much. I'm also diagnosed with PPMS, although they're not entirely sure as my case is atypical and complex. Also, like you, I have a connective tissue disease and ocrelizumab was selected with the intention of treating both conditions. I go back for the 2nd half on 7/6. I did a post about this if you're interested in reading more about it. There's also a Facebook group with over 3,000 members discussing Ocrevus. Best of luck to you, I hope you're able to get started soon. 😊

[Gods_Girl in reply to dianekjs]

Thank you so much, Diane. I'll pray for you to start feeling better soon, and that your second infusion goes smoothly. I will follow you so I can stay updated on how your feeling. 💓

[greaterexp]

I hope everything goes well for you!

[bavery207]

Gods_Girl I signed the paperwork for Ocrevus May 31, at that time the infusion center near us had not finished their training, but it has been 4 weeks and I have not heard anything, so I have a call in to the MS Center I go to as I write this, wondering what is going on. Of course, as luck would have it I have developed an infection in my gums near an old root canal and I guess I have to get that cleared up before the infusion as they say no active infections when receiving Ocrevus. I am a patient person, but enough is enough!

[Gods_Girl in reply to bavery207]

Oh geez, what bad timing for a tooth infection. I hope we both can get our treatments soon! I think we should request another JC virus test, don't you? Since it's been so long, you know? Just to be safe and make sure we haven't contracted it while we've been waiting. Keep me updated!

[WAshingtongirl in reply to bavery207]

bavery207 , sorry to hear about the infection and delays. I'm sure this will have to be cleared up first. Praying for a quick recovery and scheduling for your first infusion. 💕

[bavery207 in reply to WAshingtongirl]

Thank you so much WAshingtongirl . coincidentally I got a call from the Ocrevus people. It was just a check-in, but I am in their system! They were a bit surprised I had not heard from my infusion center yet.

[Pink-1]

I had to go through more blood tests and an 11 day wash out and am finally scheduled for July 17

[Gods_Girl in reply to Pink-1]

Let us know how you do, Pink. Prayers!

[WAshingtongirl]

Welcome, Gods_Girl ! I love your name. Like you, I have MS and Sjogren's. Rituxan was one of the 3 meds my docs were going to use, but they went with azothiaprine instead. I hope the powers that be get the Ocrevus infusion approved for you. A few people here have already started treatment. I know they can answer your questions. Praying the best for you! 💕

[Gods_Girl in reply to WAshingtongirl]

Thanks, Tutu..i love your name too! 😄 Definitely gonna follow you since we have these 2 monster diseases in common. How are you doing with the azothiaprin? I'm so glad I found this site, because I got off of FB a while back. Glad to meet you all! Prayers and blessings. 💓

[WAshingtongirl in reply to Gods_Girl]

I've only been on the azo for a month. Was just officially diagnosed with the Sjogren's and Lupus then. So far, just a few tummy upsets from time to time. Bloodwork will be done in August and we're hoping the new drug helps lower my liver levels (I have Autoimmune liver disease too, and all these Autoimmune diseases went crazy following a fever in April). I am hopeful!

How are you handling the new MS diagnosis? Was this expected or a shock?💕

[Gods_Girl]

Hi again, all. Ocrevus is still not yet available at almost all hospitals in Louisiana. But I have a new problem that popped up that needs attention anyway, so I need to take care of it first. In the meantime, I'm taking 1200mgs. of Alpha Lipoic Acid. My next MRI of the brain & spinal cord is Oct. 25. I guess I'll see how things are looking then, and re-evaluate what the best course is. Thinking of and praying for all my fellow MSers. #KeepSmyelin! 😊