The MyOView was a little bit of a let down. I was expecting more
Soo... I came out back to the waiting room after getting the IV thing started and a women looked at me and said "Looks like that treadmil really worked you over." I said "Nah... I just got the IV started... I do not like needles." She said "Oh... by how red your face is I thought you just got off the treadmil." I said "Nope have not even been in there for that yet."
So... then I go in for the thing that is like a CAT Scan, it takes pictures of your heart. Then I was sent back out to the waiting room. The same lady looked at me and asked why I was there. I told her because of a rapid pulse. She looked at me and said "you are too young to have heart problems. How old are you? 19?" I laughed and said "No, I am 29." She said "Oh my!" then she asked about if I had kids and was married and all that jazz.
Then I finally got to the treadmil part. My target heart rate was 159. My pulse when I started was 80. The guy told me it might take me while to get to 159. Then I started walking and less than 2 mins my heart rate was already at 132. Then just a little over 4 mins I had reached my target heart rate and then by 6 mins into walking I was at 189. He had me stop walking when I got to 6 mins.
Yeah... I do not think that was too good. But my BP was 139/98.
Then I had my RD appt. She said she was going to let me have Remicade in January, and then after that last Remicade infusion, she was going to switch me to something else of my choice. She told me I had 3 choices still. She said she did not think any of the other infusions would work as well for me as the Remicade has.
She was glad to hear that I had no bubbles on the bubble test. But she thinks that maybe what I experienced the night before and the night I went to the ER was probably from the Remicade. She said she has been researching and feels that it is the Remicade that is causing all of my BP & Pulse problems. She said everytime she looks over my file and all... nothing points to me having high BP until after I started Remicade.
She said she likes the results I am getting from Remicade, but it is not worth me having all these heart problems. So... said she would feel better if I would switch to something else, especially since in order for me to receive the full benefits of Remicade she will have to move me to every 6 weeks. Since it looks like I only have 6 good weeks and then start to have symptoms return again before the 8 weeks is up.
I told her I wanted to lower my prednisone dosage and try to come off of it. She said she felt I should start coming off of it now as well. Since I am doing well, and my inflammation is down. So... I get to start 9mg of pred this week. and then when I go back to her in 2 months I should be down to 7mg. That is what she said anyways.
She said she is not sure why my Fibrogens were so high, if I did not have a stroke. She said the only other reason she can think of for that to be soo high was that my RA was very active and my inflammation was very chronic at the time. She said, but the remicade should have helped with the acitivity and chronic inflammation. So she is not sure what is up with that.
Well... I think that is all. I will post more if I remember it.
I had a myoview scan a few years back when my father died of a massive heart attack.My G.Pwanted me tested to make sure heart conditions didnt run in the family. I didnt do the treadmill, I had the injection to increse my heart rate as I couldnt run on the treadmill because my RA was bad at the time. The injection went a bit wrong and my heart was pounding so bad that they machine was bleeping all over the place and they had to get another injection into me to slow it down..lol. The scan its self was a bit weird, that machine is so huge.
Glad to hear that they dont think its a heart problem Joonie.
There she is! Been wondering where you have been. Thought maybe you were busy Christmas shopping for the kidlets!
Hope you can find another infusion that works at least as well as the Remicade if not better without the heart side effects.
Have you done any research into what you might like to try?
I am not sure which I would opt for next. She did mention Rituxan. The last time I talked to her, before this appt, she was talking about Orencia, but now she is just leaving it up to me to decide.
She told me either of the others I choose I will probably have to be put on more meds in order for them to be more effective, as compared to what I am taking with Remicade.
She did say if I switched to another one and was not happy with the results, I could always go back to Remicade, but she did not know for sure if I would respond as well as I have.
So... I am not sure what to do.
She has said to me a couple of times in past visits that Remicade was the best treatment for my RA case. Which I believe her, because I have seen how it works so well for me, as compared to how Humira did not really work for me.
I am only on 300mg of Remicade and it does so well for me.
My little Remicade stamp figure, this visit only had 6 joints circled that contained inflammation! That was pretty cool! The joints circled were mostly my toes & fingers, but a wrist, ankle and elbow were circled as well.
She was very happy to see that my right knee was not swelled like it has been in the past. She said she was worried about it, but since the inflammation has went down it looks and feels ok.
Also, she is suppose to send me off for an MRI of my hands on my next appt in Feb. She wants to see what they look like. She said she did not send me off for one when she said she was the first time was because we were pre-occupied with my other problems and she wanted to get those straightened out first. So... MRI of my hands coming soon!
I told her about how the Remicade makes me feel tired and blah, since my last 2 infusions. She said that is just another reason to want to switch me, too.
In the beginning, the Remicade made me feel like I had energy and I did not feel like I do now. But like I told her... I am not really sure if it is the Remicade that is making me feel tired or if it is just my pulse and blood pressure making me feel that way. She said only way to know is to switch.
I am sleepy.
Thanks for the replies.
I hope you are feeling better, Pinnie!
And wannabe - I hope you are doing well.
I have just not been feeling like getting on the internet that much lately. I just feel blah and I am starting to hurt again and you know the drill.
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