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Remicade..side effects...really bad joint pain...?

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Crohn's Disease
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Posted 5/29/2010 6:50 PM (GMT 0)
Hi I have been on Remicade since Sept of 09..but past few months things have started to change...besides the fact that i feel Remicade is not working on my anymore..since i have had diarrhea,stomach pain,bloating,...i have some other concerns...i figured where else would i come but here. I know that everyone on this board is not only understanding...but educated on the issues we all face. I have started having this strange rash..that appears randomly all over my body. It starts off as a blister..that might either be filled with pus or maybe a clear liquid not sure. Sometimes...they itch..or hurt..they are inflammed...sometimes they break open and scar me or they seem to somewhat disperse back into my skin. I have even had bruises left behind from them. Its very weird. I went to my primary care doctor..she said it is not fungal and that i should see a dermatologist. Which I can do...but I am seeing my GI doctor on Tuesday to talk about whats going on with me. Has anyone had an experience like this?

Also the second part to my question is I have developed a nodule on my arm..location would be the back of my arm about an inch going up from my elbow.  Its inflammed and it hurts if anything touches it. Last night unfortunately I was at the ER because i had bit my cheek my accident and in turn my top teeth bit where my wisdom tooth was removed..which swelled up and formed this groove and got infected(dental abscess)...bad luck for me...well they did an xray of my arm and said the nodule was not on my bone..and her guess was maybe its on the tendon..since it can't move around. I have also been experiencing what i think is joint pain...but what happens is on the side of my knees..something swells up and hurts..and its in one spot...sometimes on the front of my knee..mostly on the side.  Well my primary care said that the dermatologist should do a biopsy of the nodule and the ER doctor said I should go to a orthopedic surgeon. Has anyone experience any of this and do you know where i should go. It takes time and its expensive for me copay wise for a specialist. I don't want to waste my time...the nodule especially is what concerns me. Should i just ask my GI doctor to do a cat scan or an MRI on me? Thanks in advance i appreciate any replies.

Posted 5/29/2010 8:02 PM (GMT 0)
Have you had any tick bites that you can remember? That sounds a lot like Lyme disease to me. I have had Crohn's for atleast 16 years and had my worst flare to date last year. I then had unexplained symptoms such as swollen foot, spotty joint pain etc.. I was tested for lupus 3 times all of which came up negative. I begged them to listen to me & due to 3 tick bites, to test & treat me for Lyme the entire month I spent in the hospital and beyond. It wasn't until after the steroids that they finally listened since suppressing my immune system was causing more complications. Needless to say I tested positive and now even had seizures due to the Lyme. It's quite a mess ! It's most prevalent in the northeast, but its worth looking into. The ELISA test is only 50% accurate so it needs to be coupled with western blot. Good Luck....
Posted 5/29/2010 8:12 PM (GMT 0)
No i have not been bit by a tick...i haven't even been outside except to go to the store..i live in a suburban city. I do already have Lupus..or so its thought that i do. I feel like i don't know which doctor to turn to. Most of these doctors just seem to only talk to me..and then charge me a copay. I am really looking for someone who has ideas and wants to get to the bottom of this.
Posted 5/29/2010 8:37 PM (GMT 0)
I can absolutely relate. Drs. are so specialized it seems that nobody looks at the big picture anymore. I am having the same problem. I feel like a ping pong ball...
Posted 5/30/2010 2:29 AM (GMT 0)
I personally have not had the rash issue, but when I was researching Remicade, I do remember seeing multiple posts about people saying they had problems with a blistering type rash from it. Bring it to your GI's attention for sure.

No idea on the nodule though. :( Good luck.
Posted 5/30/2010 6:19 AM (GMT 0)
Research impetigo, and see if that looks like the blisters you are getting.

I was getting something similar, almost like acne on various places of my body. Painful red bumps that would sometimes last for weeks, and sometimes scar. Last time I was at the dermatologist to get the annual skin cancer check, I asked her about it. She prescribed a cream that you work under your nails, and inside your nostrils. Whatever it was, it worked for me, and I haven't had the issue since.

Could be that the Remicade is suppressing your immune system enough that you just can't fight it off on your own.

No clue about the nodule, but it sounds a lot like the "ganglion cysts" that my wife gets occasionally. She has rheumatoid arthritis and occasionally gets them.
Posted 5/30/2010 6:21 AM (GMT 0)
Oh, and as for the Remicade seeming to not work, make sure you tell your GI. That happened to me about 3 years in, and I ended up flaring really bad. He doubled my dose to 10mg/per KG of body weight, where it was previously the normal 5mg/per KG. That did the trick and I went back into remission. You can also ask him/her about the possibility of moving your infusions closer together. That usually works if you start to see symptoms return before it's time for your next dose.

Hang in there.
Posted 6/19/2010 2:00 AM (GMT 0)
Hi,thanks for all your replys..i went to my primary care doctor and she gave me some steroid cream that seems to help a bit with the rash on my chest and it seems to help with the inflammation around the blistering rash..she gave me a referral for a dermatologist...but then i went instead to my GI...he said this is all from a low immunity...and that the nodule is no big deal no cancer..just that its in the skin...and now i seem to have one in my right arm as well....i only have one rash left...thats just red and blotchy in a bad place..take a guess..exactly where my underwear rubs...how lovely...the steroid cream is not working on this area.......right now...my GI and I have decided..to stop the Remicade and see how i am ...go back on Pentasa...and see if i need to to try Humira next...but I am having one VERY BIG PROBLEM..THE WORST JOINT PAIN OF MY LIFE...i tried to call my GI on call the other day..when i couldn't move one of my arms...he was pretty mean..one of those not so nice doctors and not helpful...and everytime i call my GI bad luck the office is closed..but i think its because I am stopping the Remicade or its a side effect of it...even though i have Lupus..or so its thought that i do...i NEVER IN MY LIFE HAD JOINT PAIN SO BAD....its like my joint swells up...gets red and inflammed..stiff and sometimes..i have trouble walking or i can barely move arms..wrists...fingers....does anyone have any idea what to do? I talked to my rheumatologist and he said come in and lets talk about steroids and i just thought oh no...please...i just don't want to take those anymore..so any suggestions please mention...because hot water...heating pads..aleve, tylenol and ibuprofen do not work at all...thanks in advance
Posted 6/19/2010 2:12 AM (GMT 0)
Well. That's not right.

Are you running a temperature?

Look, if it gets so bad you're having trouble moving or taking care of yourself, my instinct would be to go to the hospital's emergency department and ask for help, especially if it's on the weekend or you're having trouble getting your doctors to respond.

You don't want your joints to be damaged by all this swelling and inflammation. Maybe better to deal with it sooner rather than later...?

You might like to pop over to the lupus forum and ask their advice too.

Sorry you're dealing with this.

Ivy.
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