IM going to start this first post out with my first half treatments of ocrevus and what side effects and things I noticed.. If you get bored I totally understand. But you may find some funny things in there. This is me we are talking about.
I was taking a drug called Tysabri. I really liked it except the screaming headache that NOTHING would get rid of for 2 days after my treatment. BUT, I figured, 2 days sacrificed for a month of feeling good was worth it. on the injections I felt horrible everyday like I had the flu and was tired and miserable, achey, depressed, muscle aches and stayed in bed all day because I didn't feel good.
They do a test on you every so often called the JCV test (stands for John Cunningham Virus) if you test positive and keep taking the treatment causing the positive JCV test long enough you can get PML (don't ask me to spell the name of that disease please!) It is a disease of the Brain that is 9 out of 10 times fatal and the 1% it isn't fatal you are just incapacitated. The normal test result that they take you off Tysabri for JCV is 0.4%. My test result was 3.8% Needless to say my dr was freaking out trying to get me on the phone. We canceled my next Tysabri appointment and I came into the office to discuss my "Options" which there really weren't any.. I could take Ocrevus.
Ocrevus Is a rather new drug but they have seen a lot of success putting MS sufferers into remission with it. That sounded good to me where do I sign up!
well we had to jump through the hoops and red tape and blah blah blah blah finance and insurance then grants because this treatment is .. You ready for this? 80 ish thousand dollars PER treatment. thats not per year thats each time I get a treatment. geesh!
so we went through alll the Grant funding and got approved THANK YOU JESUS!!
Finally its my first day I am getting 1/2 dose my first time. This is at the same infusion center, same nurses everything that I had with Tysabri Just different medication.
My husband John can't stay with me he has to work so a dear friend Tara from our Wednesday night small group class at Church said she would come sit with me and keep me company (and make sure they are on top of things) besides I'm going to be there 5 hours.
My Friend Tara and Me.
She gets there, we get settled, they get my iv in first try!! Everything is a go we are ready for this!
They give me a steroid shot in my iv line before the treatment to help with side effects as well as benadryl and some tylenol. I start to feel woozy but have a horrible taste in my mouth from the steroids and the saline.
I couldnt find my picture of the Ocrevus infusion so this is Tysabri. You get the Idea.
They hook me up to the Ocrevus everything is going smoothly till about halfway through. I start losing my voice and my eyes start swelling shut. my neck starts swelling. a second later it was obvious my throat was closing. The nurse had put me right by her desk (I always reacted in hives and itching to the Tysabri so she figured Id do the same to Ocrevus) she came running over there and salined me and hit me with another steroid shot, directly in my iv line then another saline. She said she was gonna "call the dr first but throat closing warrants immediate action he will understand." I started laughing, thinking yeah I hope so!!!
I could feel the swelling going down and I was ok in a few minutes. she kept checking on me through out the rest of the treatment. I was still coughing and raspy and she didn't like it so she gave me another half of the steroids (she called the dr first) and a benadryl. Yes I was so out of it. Jittery but tired. John made it up there to take me home and I slept the rest of the afternoon. That night after I woke up I had HORRIFIC Indigestion and stomach cramps. I called in and they said to take the maximum dosage of antacids I was nauseas too so he said to take phenegren ( I had some still from before) and to lay on my left side. He said to try to drink some sprite or ginger ale as much as I can but a little at a time and some saltine crackers would help. I knew I wouldn't be able to eat those crackers so I drank the sprite took the meds and laid on my left side and went to sleep.
I felt better the next day. I was really tired but that was all. I felt ok.
2 weeks later (this past Thursday) June 20 I had my 2nd half infusion. Everything went just like before. everything was going good Tara was there with me. John was working in Florida. I was sitting by the nurses desk, ONly todaywe were the only ones in there!!! kinda creepy. It was so quiet. But Tara and I kept giggling and making racket. I did ok till half way through the treatment. Then my voice went raspy and my eyes swoll up and my throat tried to close. It wasn't as bad this time but it was the same way as the time before. The nurse was right there with a steroid shot and gave it to me in the iv line and just like before. The swelling went down and I felt fine again. John didn't get there in time to take me home (he didn"t think he would) sooo Tara and I went to chicken salad Chick and we ATEEEEEEEE! all those steroids made me hungry! but by the time I was finished eating, I was exhausted and my head was hurting a little bit and I had no ibuprofen or tylenol on me. so she drove me home. I so appreciated that! It wasn't that long maybe 30 to 40 minutes John got home after that. I was snoozing in my recliner. (I got him chicken salad chick too so didn't have to cook supper Bella was gone on her missions trip to Atlanta)
I didn't have the bad indigestion because I took the maximuim dose of the antacids before my treatment this time. I slept a lot. The next day my stomach hurt. John had gotten these antacids with cooling effect in them??? ughmm no. I took the last of my regular ones before my treatment, OMG those menthol cooling effects things made me throw up so bad. Then he made me eat tums and not the fruity flavors, the chalky white ones which I was gagging on that. I begged him to go to the store and get me some more plain antacids. He finally did today after I threw them up again and I was in tears my stomach hurt so bad. so now I know when I first get up take the antacids and when I go to bed at night Take the antacids so I wont hurt. and drink drink drink lots of water with them.
The only other unusual thing I have noticed is today at church we were in worship service we had sang 3 songs and it was time for the offertory prayer (we were still standing for the prayer) my knees got weak and buckled and I had to sit down. I had no choice I was falling so I went with it and sat down in the chair..john was holding my hand or I would have lost my balance.
I work the front desk in the lobby also and I wasn't able to stand up as much as I usually do. I had to sit down at the table there beside our desk. I was wobbly when I got up, BUT... It was hot in there. They open all the doors and there are doors on all sides and it gets hot when you get all the people in there and the doors open and its hot outside. so the heat was getting to me so that may have been the problem with the front desk part. I dunno about the worship service part it was cool in there, but I'm gonna make note of it and watch it.
other than these awful stomach cramps and being tired I feel pretty good. NO horrible headache! and I don't have to do it again for 6 more MONTHS!!! WAHOOO!!!
Nancy
