I feel GOOD! | Arthritis Information

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Since the beginning of December my inflammation, swelling, stiffness, and all those nice RA problems and the other problems that my RA exacerbates was getting worse and kept getting worse.

 
But...
 
I got my infusion again yesterday, along with a stroid IV of methylprednisone.
 
I woke up this morning and all my joints are way down in the inflammation and swelling and not much morning stiffness. WOOHOO!!!
 
I have still be getting those "head aches" on the right side of my head. I told my RD about them yesterday, and she said probably migraines, and was going to RX me something, but decided against it, and told me to see my neourologist for it. So, now I have to make a neourologist appt before I go back to see my RD in Feb.
 
I have been kinda "busy" hubby & daughter were off until this week. So, I have been spending time with hubby. He just went back to work Monday. We were like vampires since he had been off work the day before Christmas Eve. We stayed up all night and slept most of the day, and did not ever leave the house until it was dark LMAO! Our son was on the same schedule, he started our schedule like that because he was sick and his medicine made him go to sleep way too early and he was up at 1am and did not go back to sleep until 5'something am. But we are all back on schedule and all. So no more vampires.
 
My fingers were getting BAD again. I could not bend them, and after you are use to being able to move them more freely, it is kinda hard to figure out how to adapt again. For me, if I go a while, like a month or so of being able to do things in a semi-normal way, then I start to revert back, it takes me a while to adapt to the limitations again. But once I am remember how I adapted to the limitation, then I am good to go.
 
I guess when I go back to RD in Feb or March, not sure when my appt is exactly, I will tell her I want to switch to Orencia, if this infusion I just got yesterday makes me feel tired all the time, like it has been the last 2 infusions.
 
I was kinda disppointed when I went to get my infusion yesterday, they got a new Remicade nurse. The Remicade nurse left and went to work at a nursing home to get more hours. So, now I have a new Remicade nurse and well frankly she sucks!
 
She suckes because she had to stick me 9 times before she hit a vein. That is right! She hit maybe 2 veins and then "lost" them. But good news she did not blow any of my veins! Sheew! She is not a good sticker, everyone she had that day, it took her a while to find veins and get the cathater threaded. She had to send one lady to the lab across the street to get them to hit a vein. She wanted to send me, but my legs were so stiff and swelled, I could not walk across the street.
 
I mean this lady sucked so bad at finding a vein and hitting it, that she could not even get one started in the vein I always get blood taken out of. I mean she did not even hit the vein not once!
 
I was almost in tears from being poked so much. I felt like I was going to be sick and she kept asking me if I was ok. I was like yeah. She left the turnicate on my arm so long that my arm was a purplie blue. It was awful!
 
The other Remicade nurse, she would get it on the first try, and only once she had to start in another vein, but that was my fault, I did not drink a lot of fluids before my infusion.
 
I told the new Remicade nurse when she was all done poking and proding me, that it could have been worse.... she could have stuck me that many times and then just sent me home without my infusion. I told her about the bubble test fiasco. She was like she would never send me home before of not being able to hit a vein she would send me across the street to the lab for them to do it.
 
 
Joonie! Missed you girl! Glad you are feeling good today after yesterday's fiasco. Glad you are feeling better!
 
There used to be a really bad nurse at my RD's office too.  She was horrible-absent minded and also not a good stick.  She also talked to herself whenever doing something.  I posted way back about an infusion day where they sent me home cause they couldn't get a vein.  It was something like 15 tries.  I had them keep trying cause I really couldn't afford another day off from work.  Had to anyway.  Well, the whole time she was trying she would talk out the steps...open the package, get out the alcohol...and so on.  That would be ok, but when she would try for the vein she would say..."Uh oh, don't think I can do this....oh dear, not good....and so on.  Doesn't give you much confidence.  Then there was the time she called me Betsy the whole day.  I almost didn't say anything, but then she was talking to another nurse about how Becky didn't make it to her appointment today.  DUH!!!  I use to call her "stupid nurse" when I was talking about her to others.  Scary thing...she left the office to go work on a Cardiac Floor.   Hmmmm, not a good switch...
 
Orencia worked for me for a bit.  I hated having to go once a month.  Plus, the copay was crazy.
 
Becky
 
 
Oh, the people that were in there getting their infusions the same time as me, were talking about how she done things way different than the other Remicade nurse. Which she did a lot of things different.
 
Like the nurse that left, she use to put the benedryl in the small bag and let it drip while she mixed the Remicade. This nurse, she pushed the benedryl in the IV tube. The way this nurse done it, by pushing, it made me get a much worse benedryl "buzz". I get really lightheaded when they give me the benedryl thru IV, and this time it was really bad. I told her about it she said ok. But I was still dizzy and lightheaded even after I left to go home. It was like I was drunk, I was staggering a little and everything was swimming. It even made me sleepy. It never done that when the other Remicade nurse done it with a slow drip.
 
The new nurse she was an ER nurse. So... that kinda explains it all. Every ER nurse I have ever encountered could never get IV started on the first try.
Maybe she will get better with practice, more frequent than at the ER?  And shouldn't they require nurses who can get IV's in quickly in an ER?  Jeesh!  I hope she does get better with practice. Because I do not think I can take another fiasco like that. I mean it really made me feel sick while she was sticking me and it hurt alot!
 
Not sure about the ER nurses getting IVs in quickly. When I went to our ER, it took that nurse 3 times to hit my vein. It was just odd to me, because the last Remicade nurse she would get it on the first try almost every time and it never hurt, except the ole stick.

Glad to hear you are having some relief joonie.  Always a good thing!

Thanks! I just wish it would last longer than 5 weeks. I get my infusions every 8 weeks.

Sorry you had such a time with the IV.  I hate those!
Glad you're feeling better!
JOONIE!!!!!!
There you are! Been wondering what you've been up to. Glad to hear you're feeling well. That's fantastic news!! Instead of switching to Orencia, can they schedule your Remicade infusions closer?  You know that it works, it just wears off.  I got mine every 6 weeks.  I did feel it start to wear off near the end of that 5th week.  I would just hate for you to switch to Orencia, and have it not work.  I gave Orenica a year-not a winner.  Of course, other people consider it a wonder drug.  I guess it just depends on each person.
 
ok...just rambling.... 
 
good to see you posting!
[QUOTE=rocckyd]Instead of switching to Orencia, can they schedule your Remicade infusions closer?  You know that it works, it just wears off.  I got mine every 6 weeks.  I did feel it start to wear off near the end of that 5th week.  I would just hate for you to switch to Orencia, and have it not work.  I gave Orenica a year-not a winner.  Of course, other people consider it a wonder drug.  I guess it just depends on each person.
 
ok...just rambling.... 
 
good to see you posting!
[/QUOTE]
 
Well... the reason for the change is not because it is not working for me, it is because they are still not sure if I had a TIA or not last March, I think that is when it was. My RD is very worried, because my fibrogen antibodies are up more than double or triple the normal. And those have something to do with having stroke or warning signs of a stroke. My right side of my face from my cheekbone to my forehead is still numb, like it was when they thought I might have had a TIA. But all testing says I did not have one. SO... no one knows for sure.
 
PLUS, RD thinks that the Remicade is the cause of my rapid pulse & High BP. Because I did not have either of those until I started Remicade.
 
My RD is soo worried about me and the remicade, that she knows me by name and knows all the details of my problems without looking at my file. She always comes to see me and do a mini evaluation of me before I receive my Remicade. And asks of any new symptoms and reminds me to go to the ER if I have anything weird going on after my infusion and to call her on her cell phone.
 
So... that is the reason for the switch. RD really wants me to switch, but she is kinda torn as she does not think Orencia or Rituxan will do as good of a job as the Remicade has and that she will probably have to keep me on Prednisone and add more meds to get the others to work like Remicade is for me.
 
So... that is it in a nutshell.
i am glad to hear you are feeling better.  we missed you here.  i needed you good level headedness to keep me sane.   i hope you feel beter for many weeks to come. wonderwomanHey Mel! How are you?
 
Hi WonderWoman! I hope you are feeling a bit better! I have been keeping tabs on everyone, even you.
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