Ocrevus - Tomorrow's the Day

Well, tomorrow morning (Thursday) I go in for my first infusion of Ocrevus. I am very nervous, but I think ready - this will be my first MS treatment. I'm diagnosed with PPMS, with about two dozen lesions on my brain and one on my spinal cord at C7. However, my case has been complex and unclear, so the diagnosis is a little uncertain. I also have a connective tissue disease that ocrelizumab is expected to address as well. I'll report back when I'm up to it, there seems to be a wide range of responses to the infusions. Wish me luck!

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  • GOOD LUCK TO U, I ALSO HAVE PPMS, THINKING ABOUT TAKING THIS DRUG.

  • dianekjs hope and pray all goes well with your infusion tomorrow. I am doing well with mine. So far so good.. I'm not really noticing any really strange issues. My balance has been off for the last week or so but I have dealt with that before so I would call it not unusual. I am so very clumsy now... Ha ha ha 😂 however still responsive reflexes (most times) keep me from having more messes and broken stuff to clean up. I hope all goes well for you with it as well. Thoughts and prayers

    Allen

  • Thanks, Allen5280, I've been wondering how you've been doing since your infusion. I'm glad things are going generally well for you and look forward to following your progress.

  • Good luck dianekjs! I hope your infusion goes smoothly without side effects! That would be wonderful if it helps with both diseases.

  • Thank you for keeping me informed. I will follow with great interest!

  • I'm awaiting the schedule for Ocrevis as well any day now and I'm nervous as well. Will be very interested in how you do. Let me know if you don't mind. Many thanks

  • I will update as I go, Pink-1, you can check back here or follow me if you want to be alerted to anything new. I hope you are able to get started soon, and once you're at the infusion center and things get underway it gets a lot less scary, or at least it did for me. Let us know when you get started. :-)

  • Good luck and thanks. I will let you know when I get started

  • I have completed both "first" infusions of Ocrevus and they went very smoothly. I did have mouth sores after both but they weren't that bad. You receive a steroid, Benadryl, and Tylenol before to help prevent side effects. Now I am just hoping for good effects since I have had significant progression since February. I hope you have an easy time and excellent results.

  • kathy5500, thank you and I hope that Ocrevus stops your progression in its tracks. Trials showed it was very effective for stopping the development of new lesions and/or evidence of new disease activity. Keep us posted!

  • Good luck to you, I hope all goes well.

  • dianekjs Good luck! I hope you do well, keep us posted.

  • You are very brave and I hope that it improves your life. My prayers are with you, blessings Jimeka 🦋 🌈 🙏

  • Praying all goes well for you this morning, dianekjs. 💕

  • I have completed both my first and second Ocrevus infusions a week ago yesterday. I had not side effects and the infusions were easy to tolerate. Seems that the protocol when receiving this RX is two tylenol, IV benedryl and I also received IV solu-mederol. The only thing I would suggest is that for patients, who also have diabetes that you prepare for high sugar levels from the steroid that is given. My sugar went to 460.

    I truly believe that this drug may be the answer for me and many others.

  • Thank you gocowboyspw, I'm glad your infusions went smoothly and hope you will update your experience as you go. Best of luck to you, I hope Ocrevus helps many of us.

  • Best of luck. Will be thinking of you. I'm sure all will go well.

  • We are all cheering for you! You're in our prayers.

  • Best of luck!

    Please share your experience with us. I should be starting mine in 3 weeks

  • SlmHarris, I will continue to update as I notice anything new. I hope you will share your experience when you get started as well. Best of luck!

  • I had my second 300 mg of Ocrevus on Monday. No reactions other than being tired. Have not noticed any changes but it is early. Good luck.

  • RobertCalifornia, congratulations! I am very tired today, and still have a dull headache I can't seem to shake, but no major issues so far. My neurologist said that with rituximab most of his patients had noticed the biggest improvements after the second full round at six months, so perhaps it will be similar with ocrelizumab. Patience and positive thoughts - please keep us posted. :-)

  • dianekjs , I just had my first infusion last Friday, and I also had a headache and tiredness for a number of days afterward. I only now have some tiredness, but no more headaches :-) I'm glad you didn't have any major infusion reactions!

  • Good luck today!! I hope that it works for you. Please keep us updated when you can.

    Jessie

  • dianekjs, interesting I am scheduled for my first Ocreves treatment Sat jun 24 in Houston,Tx. I am very hopeful. This is my sixth med, non of the others have helped

  • Booda, best of luck tomorrow! I hope that Ocrevus will be successful for you. I'll be thinking of you tomorrow and look forward to hearing how it went.

  • Dianekjs, had first treatment Sat and everything went smooth. No issues at all. So far, Sun morning no problems other than the steroids do not allow me to sleep. Looking forward to second infusion in 15 days

  • Prayers

  • dianekjs I will be thinking of you tomorrow. I am waiting to hear if I have been approved for Ocrevus, but in the meantime I have an old root canal that may be developing an infection, and cannot start treatment with an active infection, so am trying to get my tooth dealt with.

    After seeing my dentist I called the Ocrevus people 1-844-OCREVUS, that is 1-844-637-3887. The people there were very helpful, first I spoke to a general person, then a nurse, as I tried to find out if dental infections would prevent me from getting the med.

    If any of you would like to get info. on the med. you can call them and get on a mailing list. Of course the info will be skewed in their favor, but it can help inform you.

  • Hope it went well for you...I'm planning on using Ocrevus also...I did the Rituximab & went well....

  • Thanks to everyone for the support, it is very much appreciated. I did okay with my first infusion overall, but it was a long day. I arrived at the infusion center a little before 11:00 this morning and left a little before 7:00 this evening. They started with IV premeds of 250 mg. Solumedrol, 25 mg. Benadryl, and 600 mg. Tylenol. Then after thirty minutes the Ocrevus infusion started, first at a very slow infusion rate, then increasing the rate at set intervals. Things got a little dicey at one point when my throat got scratchy and felt like it was closing up - it was a panicky sensation, but they addressed it very quickly by stopping the infusion and adding 2x the initial Benadryl dose for a total of 75 mg. That knocked me out for a good 90 minutes, which may have been for the best at that point in time. They resumed the infusion after about 40 minutes, returning to the slowest infusion rate. Then they gradually increased the rate until it was all in. No more infusion reactions after they stopped and restarted.

    I'm back home now and am pretty wiped out but ok. I feel strange, can't really describe it. Slight headache, but manageable so far. I'm supposed to take it very easy for a few days when the risk is highest for side effects, and I have to get in the habit of being germ-conscious since we just sent my B cells packing. My doctor stopped by the infusion center to check on me while I was there and has texted to keep tabs on how I'm doing since then. I wish more doctors realized that the little things really do mean a lot. I'm fortunate to have assembled a very special team, though it did take some trial and error. I'll update when I have a better sense of what effects I notice, good or bad. For the next couple of days it will be hard to tell what is caused by the steroids and what can be attributed to the ocrelizumab. Second infusion (second half-dose of first infusion) is two weeks from today.

  • Thanks for the update, dianekjs. I'm exhausted just reading about your long day. Wow! I'm sure you're happy to be back home resting now. You're really blessed with a great doctor, too. I'm very impressed.

    I'm sure others considering Ocrevus will be interested in following what you and others here have to say about it. A big thanks to you, Allen5280, RobertCalifornia, gocowboyspw, and kathy5500, (I'm sorry if I missed anyone else) for your willingness to share your experiences.

    I hope you get a good night's rest and that you feel 'well' in the days to come. 💕

  • Thank you Tutu, much appreciated. I am still feeling the effects today - tired, dull headache, a little out of it in general, but part of that can likely be attributed to the IV steroid that's not quite out of my system yet. Hopefully that will lift in the days to come. It's been very helpful following the experience of others here, and it looks like quite a few more people are set to start soon. There's a lot of excitement being generated by this new drug, let's hope it meets expectations. :-)

  • Good luck to you!

    My infusion has been cancelled 2x now because they are having a hard time getting it in. Hopefully soon. Let us know how it goes please

  • Good luck to you

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