1 more Tysabri then ...: I do 1 more... - My MSAA Community

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1 more Tysabri then ...

kycmary profile image
15 Replies

I do 1 more Tysabri while they get Ocrevus approved then I go to Ocrevus. My MS Specialist seems very nice, she listen to me she asked questions about what I had been on in the past. She listened to my husbands questions & she answered him.

She said to do the Tysabri that was scheduled for Monday as they could not get the Ocrevus scheduled by next week & I'm 9+ weeks since my last Tysabri. Then no more & she should know more about the insurance stuff by time for something else. It's a relief to know that something is happening. Mary

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kycmary
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greaterexp profile image
greaterexp

That's exciting news! Wow! A doctor that listens, too!

jimeka profile image
jimeka

I hope that it all gets sorted soon. How long do you need to have between the Tysarbi infusion and the Ocrevus? Blessings Jimeka 🦋

kycmary profile image
kycmary in reply tojimeka

Not really sure but she said Ocrevus would not be ready by next week & she didn't want me waiting any longer for DMT. Monday I was already scheduled for a Tysabri infusion & that will be 10 weeks since my last infusion. I believe it's a safety net as it could be 2-3 weeks to get the Ocrevus approved.

Jimeka I was at a tractor show in Franklin Co IN & saw some thing that might help your neck pain. You need a tube sock, some white rice & microwave. Oh yeah sewing machine. Put 2-3 cups uncooked rice in sock, sew opening closed then microwave for 1-2 min. Lay it over your painful neck. When it cools down just nuke it again but only 1-2 min. I don't know why I didn't think of that yesterday. A friend gave me one a few years ago when I found out I was allergic to most of the OTC pain meds. you can also use any pain ointment then put the rice sock on it. Oh & you can always stick the sock in the freezer to use as a cold compress. Hope this helps some take care. Mary

jimeka profile image
jimeka in reply tokycmary

Thank you. I have a Wheat bag, is that the same, or does rice work better? 🦋

kycmary profile image
kycmary in reply tojimeka

I really don't know that one is any better than another, I have heard of people using dried beans. I think it's just what ever area you live in. I know rice has to be replaced every couple of years & I would think the others need to be done also.

jimeka profile image
jimeka in reply tokycmary

Thank you, blessings Jimeka 🦋

kycmary profile image
kycmary in reply tojimeka

Ok just got home from my Tysabri infusion, hubby has gone to an auction with his buddies think I'm gonna have a nap.

jimeka profile image
jimeka in reply tokycmary

Yes, rest up, and relax. Pleased it went well. 🦋

Leahdevora profile image
Leahdevora

I have a very conservative doctor here in Los Angeles is Cedar Sinai and she still believes it needs another year or two to be all out there before she prescribed it. Mainly for people at primary progressive it has shown to lead to breast cancer and a few people and she’s hesitant to give it

kycmary profile image
kycmary in reply toLeahdevora

If breast cancer runs in your family then I would NOT! try it. I read some thing some where in the last month or so that said the chances were no worse than for any one else getting breast cancer. They have to list anything that happens to any one who took the drug.

Mary

bavery207 profile image
bavery207

kycmary and Leahdevora before I started Ocrevus I did some research and went to a couple of presentations. The Drs. I heard both spoke of the breast cancer risk (at different presentations). They both said that the occurrence of the cancer in the Ocrevus group was at the same rate as the general population. Granted, the Rebif groups did not have any cancer, but that raises questions about the Rebif rather than the Ocrevus. I will continue to have my yearly mammograms, but I chose to have the Rebif. (I have primary progressive MS so right now it is O. or nothing. Best wishes to the two of you .

kycmary profile image
kycmary in reply tobavery207

That's what I heard too. I've been reading all I could find & the good out weighs the bad by a long shot which is why I decided to give it a try.

kycmary profile image
kycmary in reply tobavery207

Thank you

good news for the change to Ocrevus, sounds like your specialist is up on things

kycmary profile image
kycmary in reply toMS_Indestructible

Thank you I hope so UC health is a teaching hospital I remember being a patient there several years ago & there where several students in and around, you could tell the students by how they talked to you. lol Mary

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