Ocrelizumab

[wyomom]

I am going to begin taking Ocrelizumab at the end of June. I am nervous about it. I have read a lot about it. The infusion center told me about a new case of PML in Germany. They also told me there were a hundred people waiting for approval from their insurance companies for approval, so the process is pretty slow. Wish me luck.

[jimeka]

All the best Wyoming, I hope and pray that it all goes well. Let us know how you get on, blessings Jimeka 🦋 🌈 👍

[WAshingtongirl]

Welcome, wyomom . I believe you may be new. I hope you feel as I do about the people here. You can't find any finer!

There have been a few recent posts from others who have just started on this drug. If you scroll back through posts just within a week or two, you'll find them. However, I'm sure the few who have started it here will be more than happy to report their infusion to post-infusion experience again. I can think of Allen5280 and RobertCalifornia off the top of my head. Any others?

And please let us know how you do on it. We look forward to hearing more about that and also getting to know you better. 💕

[Allen5280]

wyomom hello! I started Ocrevus on May 4th. That was the first half dose on the 4th and had the second on the 18th. I experienced vertigo and fatigue from the infusions that took a couple of weeks to recover from but compared to the other 3 dmt's (disease modifying therapies) Tecfidera, Gelenia and Copaxone, I am doing well on it. The other three I experienced horrid side effects and was unable to take them. I have a hypersensitivity to medications and I am pleased with Ocrevus so far. Other than a loss of balance and a fall recovery the side effects so far have been minimal. I did have a bout with extreme spaticity after the first dose but a change in RX for muscle relaxer fixed that. I have had a circumstance where that has happened in the past so I can't sat Ocrevus was responsible. All in all I have been given hope again where I was beginning to wonder if I would be able to take any dmt to try and stop or even slow my disease course. If you have any questions for me please feel free to ask me anything, and welcome to the forum.

Allen

[greaterexp]

wyomom , you'll have lots of people praying for you and cheering you on! I think we all have to investigate DMTs and other medicines as best we can, weigh the benefits against the risks, and take the plunge in when we feel it's right for us. I'm sure your doctor will be monitoring you carefully.

Please do keep us updated about your progress. We appreciate information, and we simply care about one another here.

[agate]

@wyomom, good luck with the Ocrevus! So far it seems very likely that the PML case occurred because the person had stopped Tysabri only a couple of months before. Articles I've read have stated that it's most likel the Tysabri that caused PML. Ocrevus is a modified version of Rituxan (rituximab), which has been used off label for MS for many years and there's never been a PML case as I understand it.

[RobertCalifornia]

I started my first infusion of Ocrevus on Monday 6/5. They gave me 50 mg Benadryl and Prednisone in the IV drip/infusion. After the infusion they gave me 25 mg of benedryl and Tylenol. I was really tired Monday and tired on Tuesday. No other side affects. I tolerated Copaxone but had a horrible reaction to Aubagio and had to go off of it. I believe that the person who developed PML had been on Tecfidera or some other drug for three years. The doctors do not know which drug caused the PML. I am excited about Ocrevus, but it is the only drug for PPMS which is what I have been diagnosed with. Good luck.

[bavery207]

wyomom I am one of those people who has filled out the paperwork, had the blood tests, and am waiting to hear about getting the new med. I will be interested in what you experience.