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OCREVUS (finally)

To briefly summarize some of my past posts about Ocrevus: I had a neuro. appt. in April (shortly after O's approval). At that point my neuro. said he did not know much about the drug but he was going to a national conference in May, would learn more about the drug, and meet with me soon after the conference so we could discuss it. We met May 31, he was impressed with what he had learned, and if I was still interested, which I was he would proceed with the paperwork. Then @ 2 weeks later an old root canal I had became infected, and you can not have O. with any form of infection so it was delayed again. The specialist @ 30 mi. away couldn't even see me for a consult 'til mid-August. There was a specialist @100 mi. away that could do a consult in June but when I met with him it turns out he had a family emergency out of the country and couldn't do the procedure til late July. Finally the root canal was redone, the infection cleared up, and last Wed. I had my first 1/2 dose of Ocrevus. Things went well, I had no big reactions. I have been very tired since then as some of you had mentioned you also had experienced that.

I have 2 questions for those of you that have started this med. 1- how long did you continue to experience fatigue? And was it as strong a fatigue the second 1/2 dose? 2- Also, as I was receiving the med. they monitored my blood pressure every 15 min. and it slowly dropped during the infusion time. I went from 129/71 to 98/58. I was not dizzy or light headed so they finally let me go home with instructions to rest, drink plenty of fluids, and check my BP over the next few days... my numbers are slowly getting back to normal. Have any of you had this type of reaction?

Despite all my delays I am still the first Ocrevus infusion they have done at this infusion center, so the nurses do not know what to expect and are as curious as I am! Thank you in advance for any info.

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bavery207 well done, you brave girl. What type of ms do you have. I hope and pray it all goes well for you, blessings Jimeka 🦋 🌈

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I have PPMS, diagnosed 2 years ago last May. I am 67 years old, older than the trial groups were (they tested ages 18-55). We'll see what happens! With PPMS it only claims to slow progression, not reverse or otherwise change things, but at this point that would be better than nothing for me!

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@bavery, please keep us updated as to your progress. It hasn't been approved in uk yet, so I am able to glean from you guys in the States as to how it works. Wishing you all the best, and praying it works. Blessings Jimeka 🦋 🌈 🤗

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Thank you jimeka, and if it is indeed effective I will pray that it gets approved in the UK before too long.

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Thankyou bavery207 🤗

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Hi I have received info from Genentech about the new drug and I am neverious and excited if that is even possible. I do have a question for you what type of transportation did you have what I am trying to say did you drive your self to your treatment?

My Doctor is in Boston, MA.

Also I am very proud of you.

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ssdw1958 My husband drove me and stayed during the infusion, bless his heart! They pre-treat you with a steroid and then something like Benadryl, which can make you sleepy, especially if you start to have a reaction to the Ocrevus and you end up with a second dose of Benadryl. At my infusion center they pre-treat with Zertec(sp?) not Benadryl to avoid the sleepiness as several of their patients drive themselves and they don't want to put them on the road sleepy. It seems everyone reacts differently to meds., but I would try to make arrangements to be driven if at all possible, because on e just does not know. Good-luck!

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I have had my first 2 doses. I was just as tired after the 2nd dose, but it is getting better. Since I am almost always fatigued it sometimes is hard to tell. My blood pressure was fine. Keep following your doctor's orders. May God bless you and help you heal.

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Yooper thank you for your response, I hope all goes well for you!

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Hi Yooper, I have had one dose of Ocrevus + I haven't noticed anything except being tiresd for a couple of days after. Have you had any improvement ?

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No changes. I think I was actually more tired after the 2nd dose. All we can do is wait and see. God's Peace

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I am curious to know how you are e doing after your treatments have you noticed any Side effects. That's for any info and I also hope everything is going well.

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ssdw1958 My first 1/2 dose was 1 week ago (Last Wed.) The only really noticeable side effect has been the fact that I am sooo tired. The first 4-5 days were the worst. Since then I have been doing better most of the day, but get really tired toward evening. I understand the second 1/2 dose may be the same way, but then we'll have 6 months to recover. Does that answer your question.

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Thanks for letting me know. I am Glad 😁 your doing better

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2nd one has taken me longer to get my legs back. But, no other side affects.

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That is good to know Yooper . I will get my 2nd 1/2 dose Wed. so I will see how I respond. Best of luck in you future infusions.

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Bavery207: I hope and pray all goes well!

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The 2cd dose is a full dose , it makes sense that you might be more tired. I feel I got more of a boost from the Solumedrol...just sayin.

stay well.

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Elle61: Thanks and best of health to you.

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Hi bavery207, congratulations on finally getting your initial infusion. I had extreme fatigue for about a week following both of the initial two infusions, and then was pretty much back to "normal." It's now been a little over a month since my second half-dose and while it's too early to be expecting any effect, I do notice that my energy level has been better than usual. I don't know if that's coincidence or related to Ocrevus. Your infusion center may be new at administering ocrelizumab, but they surely have years of experience with rituximab, which is very similar. Ocrevus is basically 2nd-generation Rituxan, and the infusion protocol, side effects, and pre-meds are quite similar. Blood pressure dropping during infusion with B-cell depletion therapies is a documented side effect that they know to watch for. It most often resolves spontaneously, but does need to be monitored. I hope this therapy is very effective for you. :-)

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dianekjs thank you so much for your response.

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I got the call the other day and I have my appointments set for the end of September and the beginning of October.

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ssdw1958 I receive my 2nd 1/2 dose Wed. Best wishes to you, I hope all goes well.

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Dito any and all info welcomed.

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bavery207, it's great to hear you finally got your dental work done and that the infection cleared so you could have your first Ocrevus infusion. Praying you continue to do okay on it and the fatigue gets better. 💕

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Thank you so much Tutu .

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