Ocrevus Check-In

[Jen's Solitude]

Hello Everyone! Just posting to let you all know I will be receiving my first Ocrevus infusion this Thursday. I'm a little nervous since I'm not entirely sure what I am in for, but hopefully everything will be okay.

I was unhappy to learn that the 5 hour process will take 6 hours according to the infusion center rep. Being as I am bed-bound I can't imagine what it will be like if I don't have a place to lay down. No way I can sit in a recliner the entire time.

The woman I spoke to by phone said they do have beds but she was vague and I didn't remember to mention I would probably be needing one. She was talking very fast and told me a couple of times how busy they are. It didn't seem like there would be a place for Curt to be with me, but maybe I am mistaken.

Agate I will try to remember all the details as you requested in an earlier thread seems like I will have plenty of time to make notes. My infusion will begin at 10:00 am and I am hoping the time passes as quickly as possible.

I'd appreciate any helpful comments by those who have been down this road already.

[agate]

How nice that you're checking in!

I'm sorry to find out you're bedbound.

Six hours sounds like a long time to me, but I understand that you can take breaks as needed.

I don't know if you looked around for previous threads but there's this:

Only registered and activated users can see links., Click Here To Register...

Sounds as if the phone person you talked with wasn't supportive at all and may have been rushed. Another call might yield a different person, one you can talk about your concerns to?

This is a major segment of your day that you're giving to having the infusion, and they ought to be willing to discuss what you can expect and ways in which you can be made more comfortable while there.

I hope they'll agree to let Curt be with you.

[ssusan]

Geez, my response just disappeared before I sent it.
They give you Benadryl as a pre drug. As a result I was really sleepy.
Only side effects were slight cough and sore throat . Was craving popscicles. For the second half two weeks later I had bought popscicles. Didn't have the sore throat.
The next day I was fine
Hydrate really well to flush it out of your system.

The first time they split it into 2 appts. From now on, it will be the full dose in 1 appt.
I am looking forward to it. My ms has been too active. I want it to get quieted down.

Dar, for me it was way easier than Avonex
or Rebir for that matter. No flu or site reactions. Just a boring day. I'll take it.

I'm sure they can provide a chair for Curt. Most people had at least one person with them.
I asked my husband to drop me off and pick me up. I knew he'd get antsy
He would have stayed in a heart beat but he's a really active person. He took the dog for a hike.

Let us know how it goes. Bring a good book, some music and head phones. Kinda like a spa day only completely different LOL

[Virginia]

Isn't this what Peg has started also. If so, she may come along and add what happens with her when she goes.

Dar, I hope this really helps you. If it does it may be well worth your time.

[Jen's Solitude]

Thanks so much for your helpful replies. Maybe I will try calling tomorrow just to see if they will allow me to lay down. Ssusan I hope I don't get a sore throat as my glands hurt constantly from my allergies. I drink lots of water but will make sure to drink as much as I can stand. LOL

My neuro said he is just hoping the infusions freeze my deterioration and nerve damage in my right leg. I would be great with that as well since I seem to lose a little more function with each passing year.

Agate I have been stuck in bed for years. I can get up and do things and I use my Drive rollator to get around our apartment and outside. It is the type that has a little seat attached which comes in handy when I'm in the kitchen doing little things.

My fatigue is never ending so I am in bed resting whenever I am not engaged in some small chore.

I hope Curt will be with me Ssusan although I've already told him I don't want him hanging there the entire time. He said he will find some local places to visit to help past the time. I just really need him for the beginning hour or so.

I'll check for more replies tomorrow. My day is officially over now as the fatigue kicks into high gear and forming sentences becomes more difficult. Have a good night folks!

[stillstANNding]

Good wishes for a comfortable, uneventful infusion Dar.

ANN

[Sunshine]

I like the idea of calling again to ask about lying down.

My infusion center has a lounge chair that goes all the way back, nearly flat.

I too hope it's uneventful and that you keep us posted

[Pegakafarmgirl]

Hey Dar,, I hope all goes well for you with your infusions,,Ssusan has hit all the highlights of the infusion time

make sure you wear comfy loose clothes, because the timeline of being there,,{My first half was 5 hours long, as was the second session,} you, really need to feel comfort

everyone is different on how they feel afterwards, so just go with the flo, and handle it the best U can

good luck,,

.

[agate]

Good idea about dressing for comfort.

For places where I can't control the temperature, and that is most places except mine, I dress in layers so I can add a layer or peel off a layer depending on whether it's too cold or too hot.

[Earth Mother 2 Angels]

((((((DAR)))))) ~

While I don't have any experience with MS or infusions for MS, I do have a little knowledge about infusions, as my husband has been undergoing chemo since January. So, I hope that it is okay, if I offer his experience.

I encourage you to call the infusion center tomorrow to make sure that they have scheduled you for a bed not a chair. You don't want to arrive and find out that you've been assigned to a chair. Most infusion centers seem to infuse patients for different medical needs, and reserving the chairs and beds in advance is necessary. Jim's appointment sheets always indicate the number of the chair he will be in.

Jim carries a tote bag with: snacks, a protein drink, CD player, headphones, CDs, a book, extra batteries.

The infusion nurses offer water, coffee, tea, sandwiches, fruit, etc. Patients are given warm blankets, pillows, whatever they need to be comfortable. So, when you call, ask what the center offers in the way of food and beverages. That will tell you what you need to bring with you.

Jim has what we call "Chemo Clothes." He has a port in his shoulder for infusion, so he wears a button shirt, rather than a T shirt. If you are going to have an IV, then you might want to wear a 3/4 sleeve or short sleeve shirt, t-shirt, top. As others have said, you need to be comfortable in your clothes.

Hydration is extremely important, from what we've learned about infusions of any kind. Unless you're otherwise directed, you will want to increase your water intake by at least 1/2 of what you normally take. You'll likely be peeing a lot, but that's good, because the water flushes your system to prevent side effects.

Jim had painful back spasms after an infusion, and it was determined that he hadn't had enough fluid during the treatment. So, now he pours water into his system during the infusion, and for at least 2 days after it.

When you call the center about the bed and other amenities, be sure to ask whether your husband can come with you and have a comfortable chair to stay with you. I'd be surprised if the answer isn't "Yes," but if you know before you arrive, you will be more relaxed about having your infusion.

You might also ask about your pre-meds. Benadryl seems to be a common one to prevent allergic reactions, but other drugs might also be given. An anti-nausea drug, for example, or even a steroid. I don't know whether this applies to the drug you'll be receiving, but it's good to know in advance what you will get as a pre-med.

Finally, don't hesitate to tell your nurse if you experience anything uncomfortable or concerning. Your nurse should be checking on you continuously and asking you questions about how you feel, but if she doesn't do that, don't be shy about calling her over to tell her how you feel.

I will be thinking of you and sending positive, healing energy your way that Ocrevus will be the right medication for you and help you in every way.

Love & Light,

Rose

[Sunshine]

I have had @20 IVIG infusions and agree with what Rose says :)

And better they infuse on the slow side than too fast re side effects

[Jen's Solitude]

Hi Again, Well things look good. I read all the replies and I hope I remembered all the suggestions given. As of now I am registered into the hospital for Friday at 10:00 instead of tomorrow. The follow up will be on the 30th of October.

I will be in the Ed-Observation section of the hospital and they will be providing me with the same meals the other patients receive. He said every room has a chair along with the bed. It will also have an Internet connection.

Seems like it will be okay. Glad I called because they do need time to set up the special arrangements. I'm feeling much better about this now so thank you all so much for your help!

[agate]

We'd like to know how it goes if you'd like to tell us. This is such an important new medicine, or at least it's had a lot of publicity, that everyone wants to know more about what it's like to take it.

In other words, some of us here are letting others find out for us so we don't have to be the guinea pigs, and if you don't mind cluing us in, we'd be interested.

Thanking us? Many of us here should thank YOU for the years you spent always being supportive on this board!

[Earth Mother 2 Angels]

((((((Dar)))))) ~

I'm so glad that you called and now have confidence that you'll be in a bed, with a comfy chair for your husband and food provided to you. It sounds like the hospital takes good care of their infusion patients.

Praying that all goes very well for you, with no side effects and excellent results ~

Love & Light,

Rose

[ssusan]

Sounds like you've straightened out some logistics and you sound more relaxed. Yay.
Here's to it stopping the progression for us all.