Need Advice!

[amw165]

I was diagnosed with crohn`s a year ago and was recently put on Remicade. I had my second infusion on Tuesday. On Thursday afternoon i started to develop severe right flank pain that came on suddenly. i waited out the night but the pain was really bad so i went to emerge Friday morning. They did blood and urine samples and found high levels of white blood cells in my urine but nothing in my blood so the doctor told me I probably had a kidney infection and sent me home with antibiotics and codiene but said if anything changed to come back in because it might be kidney stones. So that night the pain was almost gone and I wasn`t feeling too bad but during the night I started to get severe groin and bladder pain. Whenever I tried to walk I would get pain and it was a shooting stabbing pain. My biggest concern was I had stones or an infection, to try and avoid the hospital I went to a walkin clinic, unfortunately I sat there for two hours while he tried to figure it out and eventually said he had no idea and sent me back to emerge. The doctor in emerge had the same attitude, he had no idea but did another urine sample, blood work and an x-ray. The x-ray showed nothing, the urine again showed a high white blood cell count and I had a slightly elevated level of CPR. So he said he wasnt sure and told me to go home and if it got worse or more symptoms developed to come back. So last night I was sitting and chatting with some friends and I noticed my jaw and my right thumb was tender but didnt think too much of it. However, this morning I woke up and I have zero pain in my groin where I had it yesterday but my jaw and thumb are killing me! My jaw hurts so much i can barely open my mouth. I am so confused it is like the pain is jumping around and I almost feel like a crazy person! I am concerned about infection due to the remicade but this is so silly how this is happening and how much pain I have that is jumping around. Any advice would be greatly appreciated!

 

[Crohn's 35]

Hi there, welcome! This is just my suggestion, but I had my 3rd infusion of remicade and had major pain in my muscle and in all the places you mentioned. I would not get a third infusion, your body is reacting to the mouse protein.. if you do, you could end up in the ER, but with more severe repercussions. Your choice, but I am sure you will be back on here telling us how bad it was, if you take it. Listen to your body. Kidney stones I have had too but they dont react to your whole body and jaw. Get a sedond opinion BEFORE your next infusion, you will thank me later. It was hell for me.:shifty:

 

[amw165]

Thank you for the reply. I know it is not kidney stones, they ruled that out yesterday. I was concerned that it was a reaction to the remicade or an infection moving around, today the pain seems to be more in the joints and and bones of my jaw and thumb. My next remicade is not scheduled for four weeks, so I am going to be calling my Gastro to talk to him and I already have an appointment with my GP on tuesday. I just want to figure out what is going on already!

 

[Lydia]

Do you get premeds with your remicade? If you do get another infusion, I would not do it with out some benedryl, tylenol, and solu-cortef first.

Pen made some good points. You can always switch to humira.

 

[amw165]

I do get pre-meds, but just an anti-inflamitory, nothing for allergic reactions

 

[Paul Cronk]

Thanks for this post as a warning. I have come to the point where Pentasa does not do the job and I am on Prednisone for a few weeks while they do the tests to see if I am suitable for Remicade treatment to control my Crohn's and related arthritic pain. It's a nice Prednisone holiday during which I feel "normal" for the first time in two years but it has to end and then we will probably try Remicade. The alternatives are immonusuppressants/immunomodulators.

I am fortunate to have good treatment options and if the Remicade gives me as much pain as it has given you, then at least I have the alternative immunosuppressant approach to turn to.

At least I know the Preds will kick in quickly if there is a family crisis or some event that I have to be "up" for in all events.

This really is a disease which affects everyone differently and same with the meds. Trial, error, perseverance (up to a point) are just some of what we need. I have heard lots of other negative Remicade stories but I think there are also a lot of positive ones out there too or they wouldn't use it.

Good luc with either getting to the stage you accept the Remicade or finding an alternative of which there are some.

 

[amw165]

I just woke up and I am in so much pain. My thumb has gotten so bad I can't move it, the pain is also on the left side of my jaw and is so bad that I can't open my mouth and now I also have severe pain in my left shoulder and knee. I can barely move! I am just counting down the hours till my gastros office opens and I can call him. Pen, how did they discover it was a reaction to the remicade? Also what did you do to stop the pain and how long did it take? They gave me T3s with codine but they do not even touch the pain I am having.

 

[Crohn's 35]

Hi...the docs knew and I knew because it was the ONLY drug I was on. I am one of those believers that when I am on a new drug, I dont take anything, or how will I know it is working or contracditions with my meds. Mine slowly got worse too, I was plowing that day and by night I though maybe I jarred my 4 wheeler and caused pain but later on I went to ER, everday it travelled to a new place. When it hit my Jaw, I was terrified it would go to my heart. This could you too, Percocets or Oxycotins wouldnt do the trick either and my doc said only 2 every 6 hours and I said I have to take them every 4 and my I was thinking ...do you wanna come help me to the bathroom and finish it! My husband did all the calling to both my doctors to get help. So my Gi said no more Remicade. I just listen to what my body tells me. Let me know how you make out, drink lotsa water to flush it out! :hang:

 

[amw165]

So I called my GI who is located two hours away from me, he thought that by what I was describing I could be having a bad reaction, but without seeing me he could not be sure. He told me to go back to the hospital and get them to call him. The doctors in my town could not confirm or deny to him that I was having a reaction. As a result my GI got fed up and told them to get me to him as soon as possible. When I got there my GI looked me over and confirmed that yes he believed I was having a reaction. He put me on 50mg of Pred for 5 days and said it should clear up soon. He also told me that no narcotics would touch the pain I was feeling, I seriously left that I was being painfully paralyed and there was nothing I could do. By the time I left my GI's office I could no longer more my arms, I could not even wiggle my fingers. Pick took the Pred right away and tried to lie as still as possible and nap for the two hours home, by the time I got home I was still in a lot of pain but I could wiggle my fingers a bit which was a re-assuring sign. So no more Remicade for me, I am to go off all drugs and come back in four weeks once everything is cleared up and we will discuss new treatment options at that time. I am so grateful for this site and thank you so much Pen for your advice, I never even thought that this could be a reaction until you said something and after seeing five doctors in my home town no one had a clue what was going on I wouldnt have know what to do, so thank goodness for this wonderful site and the amazing people on here!

 

[Crohn's 35]

NO problem I am just glad I saw your post and was able to get to you asap. The same for my arms.. So glad your GI is on the ball, you got a good one there, don't lose him. It will wear off, just keep drinking water to flush it out. I am happy for you now