I had my latest infusion on Wednesday. I had to take the day off work to do it, and I felt guilty. But I need this.
I was surprised how much it actually helps. How much better I feel after I have it. Last month there were lots of days when it was difficult to do things, and I feel into kind of a slump around the house. I wasn't tidying up, I wasn't helping contribute. Tim would come home from working all day and I wouldn't have moved off of the couch.
He never complained. He's not like that. But I felt awful about it. So it's better now.
I had the good nurse for my infusion. She got the IV in after the first try, and it was a very relaxed, calm 2 hours.
I found out that they are moving the infusion clinic. To a bigger room! Yay! And we get cable. They really try hard to make the experience a pleasant one.
I spent my last infusion reading bridal magazines. You may call me bridezilla, but I refuse to have a crappy, awful, stressful wedding. I refuse.
All I can say is.... ROAR!
Showing posts with label remicade. Show all posts
Showing posts with label remicade. Show all posts
Sunday, December 7, 2008
Sunday, November 9, 2008
Whoops!
I hadn't really thought to update this, but while visiting with my mother she made the comment, "Why don't you ever update your blog?" So here it is. For you, Mom!
The last time I saw Dr.Sherriff he decided to change my infusion from every 8 weeks, to every 6 weeks. This was in order to stop me from noticing the stiffness before my infusion was due, and to prevent another episode like the one I had in July (couldn't walk!).
I had this infusion last month sometime. It went well... sort of. The nurse was really awful. Every time I have her, she messes up in some way. This time, she couldn't get the IV in my hand and had to switch to the other. Boo!
For the first time I was able to sign out and leave early. Up till now, I always had to wait one hour post infusion to make sure I was ok.
Since the weather has changed I've noticed more stiffness.
I'm also lowering my prednisone some more. I'm now at 3mg taken in the mornings (before 9am). My eventual goal is to be off it forever.
The last time I saw Dr.Sherriff he decided to change my infusion from every 8 weeks, to every 6 weeks. This was in order to stop me from noticing the stiffness before my infusion was due, and to prevent another episode like the one I had in July (couldn't walk!).
I had this infusion last month sometime. It went well... sort of. The nurse was really awful. Every time I have her, she messes up in some way. This time, she couldn't get the IV in my hand and had to switch to the other. Boo!
For the first time I was able to sign out and leave early. Up till now, I always had to wait one hour post infusion to make sure I was ok.
Since the weather has changed I've noticed more stiffness.
I'm also lowering my prednisone some more. I'm now at 3mg taken in the mornings (before 9am). My eventual goal is to be off it forever.
Tuesday, April 29, 2008
Second Infusion
I had my second Remicade infusion last wednesday. It went better than the first time. I think that's due to the fact that I knew what was coming! I just hung out and read my book.
Afterwards, however, was another story. When I had finished my first infusion, I felt fine. But after this second one my fingers and hands were extremely sore, and there was an enormous bruise on my hand from the IV. My mother pointed out that this was because of lack of skill at inserting the IV. Whatever the reason, I don'y enjoy looking at the large ugly spot on my hand.
In general, I'm doing good. I was dissapointed by my progress on this new drug untill it hit me - at the same time that I'm building up the new drug, I'm lowering my prednisone (an anti-inflammatory drug). Which means that I AM actually getting betetr! Hurrah!
I was talking with one of the other patients in the clinic on Wednesday... he mentioned that we need to have the methotrexate in order to make the remicade work. I'm not happy about that.
I get my next infusion in around 5 weeks. Then I see my doctor again on June 10th.
Afterwards, however, was another story. When I had finished my first infusion, I felt fine. But after this second one my fingers and hands were extremely sore, and there was an enormous bruise on my hand from the IV. My mother pointed out that this was because of lack of skill at inserting the IV. Whatever the reason, I don'y enjoy looking at the large ugly spot on my hand.
In general, I'm doing good. I was dissapointed by my progress on this new drug untill it hit me - at the same time that I'm building up the new drug, I'm lowering my prednisone (an anti-inflammatory drug). Which means that I AM actually getting betetr! Hurrah!
I was talking with one of the other patients in the clinic on Wednesday... he mentioned that we need to have the methotrexate in order to make the remicade work. I'm not happy about that.
I get my next infusion in around 5 weeks. Then I see my doctor again on June 10th.
Thursday, April 10, 2008
Drug Infusion
On Wednesday at 1pm I had my first remicade infusion at the clinic. I have to say, I was terrified. I had no idea what to really expect. The only thing I knew for sure was that they were sticking me with a needle and pumping me full of drugs for 4 hours. Not a great way to spend an afternoon in my opinion.
Anyhow, we got there and met the nurse. She did not seem very impressed that Tim was there with me, but that was too bad for her because I needed him there. I sat down in a chair and she got me ready for the infusion.
The insertion of the IV into my hand was the worst part out of all of it. I cried like a baby. I think that was more because I was scared and nervous though. After that, it was fine. I told Tim he could go home, and I watched a movie.
At one point another patient came in for his infusion, too. We watched the movie together.
After about 2.5 hours my drug infusion was finished. Because it was my first infusion I had to stay for an hour afterwards to make sure I was fine. Which I was.
After everything was done, I felt fine. I didn't feel dizzy, or sick, or anything at all like that.
Today my ankle is a bit sore, and my fingers feel a bit swollen. But it's hrad to tell if that was because of the drug switch, or because of me being broken. Who knows!
I have my second drug infusion on April 23rd.
Anyhow, we got there and met the nurse. She did not seem very impressed that Tim was there with me, but that was too bad for her because I needed him there. I sat down in a chair and she got me ready for the infusion.
The insertion of the IV into my hand was the worst part out of all of it. I cried like a baby. I think that was more because I was scared and nervous though. After that, it was fine. I told Tim he could go home, and I watched a movie.
At one point another patient came in for his infusion, too. We watched the movie together.
After about 2.5 hours my drug infusion was finished. Because it was my first infusion I had to stay for an hour afterwards to make sure I was fine. Which I was.
After everything was done, I felt fine. I didn't feel dizzy, or sick, or anything at all like that.
Today my ankle is a bit sore, and my fingers feel a bit swollen. But it's hrad to tell if that was because of the drug switch, or because of me being broken. Who knows!
I have my second drug infusion on April 23rd.
Saturday, April 5, 2008
Intro.
I haven't blogged in years. I lost the taste for it. I found that I stopped writing in my paper-journal when I journaled online. But lately there's been so much Arthritis Related issues that i just wanted somewhere to get them all out.
To catch you up, I have Rheumatoid Arthritis, which is commonly referred to as RA.
"RA is an autoimmune disease. This means that your immune system attacks other parts of your body. RA causes redness, pain, swelling or a hot (or warm) feeling in the lining of a joint, the place where 2 or more bones come together. This redness, pain, swelling and heat around the joint is called inflammation. " - www.arthritis.ca
They don't know too much about RA. There's a whole lot of technical jargon that explains why there might be so much inflammation, and talks about a thing called "tumour necrosis factor alpha" which is associated with RA. Lots of jumbled up stuff.
Right now I'm on a shit load of medications:
- Methotrexate: Commonly used to treat RA. Also used to treat cancer. Works by stopping rapid cell growth. Fun side effects that upset me include being forbidden to become pregnant while on this drug, due to the high likelyhood of the fetus having severe birth defects.
- Prednisone: This is also another one they use alot. And not just for RA. It's a steroid which decreases inflammation. Side effects include weight gain, hair loss, thinning skin, and therefore stretch marks, as well as mood swings.
- Enbrel: This one is a once-weekly injection done at home by the boyfriend, Tim. It works to block that tumour necrosis factor alpha that I mentioned. I think. Side effects for this one include reactions at the injection site such as itching, swelling, and general uncomfortableness.
They are currently in the process of switching my drugs. I'll still take the first two, but instead of a weekly Enbrel injection, I'll get an infusion of the new drug, Remicade, every 8 weeks.
I start the new medication on Wednesday, April 9th. I am not excited for it.
To catch you up, I have Rheumatoid Arthritis, which is commonly referred to as RA.
"RA is an autoimmune disease. This means that your immune system attacks other parts of your body. RA causes redness, pain, swelling or a hot (or warm) feeling in the lining of a joint, the place where 2 or more bones come together. This redness, pain, swelling and heat around the joint is called inflammation. " - www.arthritis.ca
They don't know too much about RA. There's a whole lot of technical jargon that explains why there might be so much inflammation, and talks about a thing called "tumour necrosis factor alpha" which is associated with RA. Lots of jumbled up stuff.
Right now I'm on a shit load of medications:
- Methotrexate: Commonly used to treat RA. Also used to treat cancer. Works by stopping rapid cell growth. Fun side effects that upset me include being forbidden to become pregnant while on this drug, due to the high likelyhood of the fetus having severe birth defects.
- Prednisone: This is also another one they use alot. And not just for RA. It's a steroid which decreases inflammation. Side effects include weight gain, hair loss, thinning skin, and therefore stretch marks, as well as mood swings.
- Enbrel: This one is a once-weekly injection done at home by the boyfriend, Tim. It works to block that tumour necrosis factor alpha that I mentioned. I think. Side effects for this one include reactions at the injection site such as itching, swelling, and general uncomfortableness.
They are currently in the process of switching my drugs. I'll still take the first two, but instead of a weekly Enbrel injection, I'll get an infusion of the new drug, Remicade, every 8 weeks.
I start the new medication on Wednesday, April 9th. I am not excited for it.
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