It sucks | Arthritis Information

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Well... tonight my knees have decided to swell even more and now I have hard swell, along with mushy swell. The pain is radiating from my knee up to my thigh and to my right hip again.

 
2 more weeks until my next infusion. I am counting down the days! At least I will get 3 more good weeks when I get my infusion. It is better than none at this point.
 
It is so hard to be doing well, and then to just revert back. I feel like my joints are freaking yo-yo's at this point. The Remicade is just stringing me along for a short ride then kicking me outta the car while the car is moving and then rolling down the road behind the car.
 
It is kinda frustrating. You know the medicine works, but it does not last as long as it should. At least this time it was a slower progress to get to the swelled, non-moving body parts. I think that is the most frustrating for me right now. Because I want to be doing well all the time not just a 1/4th of the time!
 
anyways here are my knees as of tonight.
 
)
 
Thinking of you and as much as I know Pred is/can be the pits, I am soooooo in love with that med right now it is scary.
 
Sending big (((hugs))) to you and ' get outta there' thoughts to your knee probs.  Hope you feel better real soon.
 
 
Lyn 
 
Edited to add cheers to the knee prob getting zapped!!
LyndeeNZ2008-06-27 01:12:20joonie,
 
i hate hearing that you're not doing well.  i didn't know remicade stopped working in between treatments.  i'm on enbrel and like it so far.  i haven't noticed any 'drops'.  have you tried that drug?
 
Nori
Joonie, please talk with your RD about increasing the dosage or giving you infusions closer together.  What dosage and how often do you receive infusions?  Have you seen the RD lately?  Those knees shouldn't be that swollen if Remicade is working for you.  They look really ouchie.  Lindyoh Joonie, I agree with the others, something needs to change. Your poor knees can't keep going through this, owie! call your rheumy and share this lovely picture. I hope you find relief soon.
 
hugs!
Deb
 Wow Joonie!! I agree, that sucks ! I also agree trhat the doc needs to see this picture!!
 
Take care
oh my, joonie!!  I've had that kind of swelling.. but not repeatedly like you do... call your RD.Oh my RD has seen my knees bigger than that. My body just likes to swell. My fingers on my right hand are swelled big time.
 
The Remicade works, it just does not last very long. Just like all the other meds I take they do not last like they should. Just like the 10mg of pred does not last but 18 hours or less, last RD said it was to work for 24hours.
 
I tried Humira before Remicade. I had to take it once a week and I would only get like 3 or 4 good days before I started swelling again.
 
 
Humira acts on your body in a different way than Remicade.  There is a lot of leeway with Remicade.  You can have the medication adjusted and time between infusions moved closer.  If Remicade isn't relieving but about 1/2 the time between infusions your RD needs to adjust the medication until you've either reached max amounts or you have more days with relief.  It appears that you still have active RA and damage continues.  It doesn't matter what happened before with the meds.  Remicade acts differently than all the others and the great thing about it is it can be adjusted.  Please talk to your RD about this increase in swelling and that Remicade is only working 1/2 the time.   Your RD also needs to know about the additional stress that you're going through.  A slight adjustment in Remicade may give you the relief you need to help your mom out when she gets home.  Lindy Joonie, I finally have to post these words "please empty your inbox" 
 
I typed a huge pm to you last night, and forgot once again to copy it just in case, before I send it, and bam, your box was full.
 
I am thinking of you ~~ Cathy
[QUOTE=joonie]Oh my RD has seen my knees bigger than that. My body just likes to swell. My fingers on my right hand are swelled big time.
 
The Remicade works, it just does not last very long. Just like all the other meds I take they do not last like they should. Just like the 10mg of pred does not last but 18 hours or less, last RD said it was to work for 24hours.
 
I tried Humira before Remicade. I had to take it once a week and I would only get like 3 or 4 good days before I started swelling again.
 
[/QUOTE]
 
I wonder if splitting your dose of Prednisone would help? I am TOTALLY not an expert on these things but have read that somewhere. Hmmmmm, Im sure someone with more knowledge on Pred will come in here? But obviously your Doc would need to advise.
Sorry your knees ares still giving you trouble...yeah, it sure sucks!!
 
Hugs......Lyn 
My RD knows the Remicade only works for 3 weeks. She actually said herself that it was just awful that it lasts only 3 weeks, but she is just afraid to increase amount and frequency because of my "stroke". She is thinking that the Remicade is what caused me to have HBP which caused the "stroke". But if the neurologist rules out the "stroke" then she will feel better about increasing amount and frequency, until then I am stuck.
 
I hope he can rule out the "stroke", because I really like the Remicade and would like to stay on it.
haven't been on for awhile hugs!!
 
my knees have been like that, and i feel for you!

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