A Question - Pic Included | Arthritis Information

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Now that you have seen that picture... would you consider that as Remicade wearing off or wore off? My knees have been slowly but surely swelling the last week or so. They get really warm and then stiff legs it is. As of a few days ago it is swelling and stiff legs.
 
I took a picture of it so I can show it to my RD when I go to see her the 25th. I wear pants when I go to see her, and it is not like she checks my swelling or can even see it. So... I am going to give her that pic of my knees and let her decide on how well 200mg of Remicade is doig for me. I am more than sure when my RD visit finally get here that I will be even worse off than I am right now. My back/neck/shoulders are is getting worse and worse each day, the pain is now in my ribs again. I had to break down and take a Darvacet. *disgusted look* I can hear fluid in my neck swishing around when I try to loosen up my neck or turn my head.
 
Pay thousands and thousands of dollars for the Remicade treatments and they are not even lasting as long as they should. It is like pissing away money. At least the Imuran is helping me out. I have had worse swelling in my knees.
 
Oh and my shoulders where the ball & socket joint is.... are swelled once again. I couldn't raise my arms to get my shirt off. I can't roll over in bed because it hurts my shoulders and my collar bone. I can feel & hear the fluid swishing around when I move my arms or press on them.
 
I am all screwed up. So... as I sit here my joints are being damaged even more because of the swelling. I just wish I was on a high dose of pred right now. At least I wouldn't have swelling. call your doctor on Monday.  she can move up the next infusion or increase your dose...or both
 
she can also call you in a pred pack...so call
Gosh, Joonie, I can't advise you on the Remicade, but I wanted to tell you I'm sorry for what you're dealing with.  You're obviously swollen and something needs to be done.  IHi Joonie,
It sure looks like the Remicade is not doing the job for you. HOw far off is the appt? Maybe you should call the dr for some prednisone to knock it back a bit.
 
Crazy how they don't even check our joints etc. The nurse yelled at me once for letting the vasculitis get bad. Well, I thought my legs were normally all full of spots. If the dr had looked at them and said something, I would know the signs to look for in my skin.
 
Don't wait this out. Hope you feel better soon.
Joonie , My heart goes out to you !!! I agree with Buckeye , call you Dr on
Monday morning and let them know what is going on with you . Don't
wait the week out until the 25th , she can at least give you something
for now .
Joonie, one more thing... make sure you take pictures the next time the swelling is down and you're not stiff... that way you have a baseline for the doctor to compare with. aww joonie - huggles ~~ Cathy
Thanks for the replies.
 
My next Remicade infusion in March 24th. My next visit with RD is Feb. 25th. My last Remicade infusion was Jan. 25th.
 
I will call RD on Monday to get something, but... I found out Friday that she will not be in all week. I guess I got my weeks of when she was to be gone for a week mixed up. I was in pain that day, so I really was not paying that close of attention to what people around me were saying, plus I had not had much sleep.
 
I will call... but will not hold my breath. OMg Joonie......... That is horrible. !! I agree with everyone else. You poor thing this disease su-ks, I truly hope you get that under control. I don't see how you are able to walk. Looking at your knee's gives me pause ,that could be me some day.The Remicade is wearing off or your dose isn't high enough. Many people get it every 4 or 6 weeks. It really important to use it as long as possible before switching to another one. So first goal is more often at a higher dose, unless you are already at the highest dose. Are you also on MTX? Many people need that in addition to the Remicade. It is all about how serious your RA is. If I were you, I would wear pants that you could pull down. Its important for your doctor to see that.

Sorry, that looks painful.   

Robin

Do not think I am at the highest dose yet, as I had just my 3rd loading dose. I can't take MTX, so I am taking Imuran in its place. I will try to remember to wear elastic pants next visit. Most times when hubby helps me get dressed he puts me in jeans.

a-nut - do not worry, you will not get swelling like that. Joonie, I agree, maybe call the dr.'s nurse and get some pred or something to help you. Does icing it or putting heat on it help any? My heating pad is my best pal. I use it constantly.
take care and stay off it for a while
Although they are swollen and you should be on 6 weeks in between infusions...they still do not look as bad as they did this summer.  It is frustrating to come to the end of the infusion and have to wait a long time until the next one.  Ask if you can move it up two weeks.  I would definitely call as much as you can.  If I remember correctly the staff only responds when you are being a pain...so be a pain!  Love ya girl, and so sorry!Oh Joonie....I agree with everyone else, your RD needs to know what is going on so adjustments can be made.  It does seem to me that 200 mgs. is a low dosage of Remicade as I don't think think I've ever heard of anyone starting lower than 300mgs.  Of course I was told that they start you off by your weight and make adjustments as needed whether with dosage or dosing schedule or both.  If the Remicade seems to be working at all, then it shouldn't be too much of a problem keeping you comfortable between infusions with the right amount of Remicade.  I hope you can get something done immediately though before those knees get out of hand.  I think your Remicade dose is too low. I know the docs like to start out low and careful but sure looks like you should be on at least 300. (I was on 500 every 8 weeks at end of 5 years - 300 worked pretty well for 1st 2 years).
 
Time for the wheel to squeek ....
Is your leg looking any better??? I hope the swelling goes down soon.

Bingethinker - Yep they do go by your weight. There was this one guy when I was in there he was recieving 800mg of Remicade.

Yes, my legs are a little better, they have went to a hard swell, which kinda compacts the inflammation and makes them not look as swelled as when the swelling is mussy.
 
My shoulders are what are giving me problems now. Makes it hard to sleep because I have to sleep on my side.
 
 
joonie2008-02-18 14:20:59Have you talked to your dr. yet? I had to do a lot of tinkering when on Remicade and ended up at 600mg every 6 weeks. Please don't try to wait it out. She is gone until next Monday. I got my weeks of when she was going to be gone for a week mixed up. I thought it was last week, but turns out it is this week.
 
I am going to call the office tomorrow, and see what they can do to help me with my pain I am having. I did not call today because it is a holiday, and I figured since the doctor woudn't be there they probably would not be either. They are long distance for me, and most times if you call while they are not there you get an answering service person and they just tell you to call back between so & so hours to talk to someone. They will not take a message. Which is pretty stupid if you ask me. I have tried, but they just tell me to call back. Like I said STUPID!

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