Hello and welcome old friend, new friends, and friends I've yet to meet! I got on her new therapy yesterday, Ocrevus, without any type of side effect or any type of issues. Well other than the IV Benadryl they gave me was too big a dose and I slept the entire morning away while I was getting the medicine. It was getting so hard to wake me up at first, nurses got very concerned but I guess I should have told them I have a very low tolerance for any type of medicine that put you to sleep. I got to the infusion center around 7:15 to find out my appointment was actually 9:30, oops! The nurses at the infusion center were great however and they worked me In by about 8:15. Having said that I did not leave the infusion center until about 2 p.m. . It wasn't really a long day however since I slept at least 90% of the time I was there.
I have no symptoms yet this morning and feel good and I'm going back for my second half dose in two weeks. Hopefully by Christmas I'll start to feel some improvements from the therapy. We will have to wait and see but I'll keep you updated weekly that's how it's going.
For those of you with the concerns of the JC virus and of tumors like erash and Chris and all the others who have talked about it as well my decision came down to a simple decision. I either stop the progression of my disability or I didn't know how I was going to handle life. So I jumped into the Ocrevus full force, even though I was on Tysabri for over 2 1/2 years and my JC positive virus count had risen significantly over two and I was going into a higher risk category than I thought was acceptable for the lack of results I was getting after the first year on Tysabri.
As far as tumors Chris that is something I will just monitor yearly as I have always done. There's no family history on my female family side whatsoever so I am very positive about that. I'm also close to 60 so my hormones have long since stopped shifting wildly which allows the body to do unusual things to itself.
I pray everyone else is doing well. Checking out the chat room a couple times a week and I see so many things I need to get back to you but I was on such a Negative downswing I just didn't have the heart to do so. I hope now that I have started Ocrevus that will be the positive incentive I need to be able to move through my pain and my disabilities and sit down and talk to all the people I miss so much. I see all the new members that have joined in our numbers have grown dramatically again since I've been away. I know I need it as I've dumped a lot on Jess and Tutu and all the other wonderful members that have jumped in to make the new members feel at home. I thank each and everyone of you wholeheartedly and I will do my best to get back to you later in the week and start working on this chat room as I need to do so much because I miss everyone so. I think would help to heal my heart to talk to all the positive people in this chat room and let their positivity and joy spread over top of me. I need to a special remember what I have repeatedly told everyone in the chat room is that together we are stronger! Until we speak again please take care. I look forward to talking to everyone very soon.
Tysabri or Ocrevus?
PPMS & Living my Best Life
Tysabri rebound - switching to Ocrevus
