Questions

[espressox2]

I am new to the forum and have a few questions. I have Crohn's with Fistuala complications. One has been an open wound for about 4 years. I have been on Remicade for almot 10 years and have had one colon resection. I have felt really good with regard to the Crohn's. My doc does not want me to stop remicade and begin something else because it is working for me.

Recently I have been having a great deal of joint pain in the ankles and knees. It is very difficult to walk in the mornings and eases as I move around. After a long drive or time at my desk it gets bad again. Does anyone else have this? What do you take/do?

Also, does anyone have any information regarding the long term effects of remicade? My wife is very worried with regard to cancers, heart desease, etc.

Thanks for any advice you can give.

 

[CLynn]

Espressox2, first off let me say I have never been on Remicade. And but for the grace of God, I have never experienced a fistula thus far. What I can tell you is that back when I was first diagnosed, I experienced the knee and ankle pain every single morning for months. I was told these arthritis symptoms tend to go along with Crohn's and the flares. I felt like I was in my 80's and was only in my 20's. But, like you, by mid day to afternoon, the pain would usually subside. Once I was a year to two into diagnosis, even though the flares were almost constant, I didn't experience this particular symptom again. Maybe that was just dumb luck, I certainly got other things that go along with Crohn's, like gastritis and canker sores in my mouth. With this latest flare, I notice pain in my right elbow and right hip most of the time, hoping it will settle down as the flare does.

 

[InChristAlone]

I also have arthritic symptoms, especially in my hips. The docs told me they see it in my neck too. I would be interested to know what other people take for this too. I was told to stay away from Blood thinning meds, but tylenol doesn't seem to make a difference. My symptoms also get better toward the afternoon.

 

[CLynn]

I personally use the generic (Walmart generic) for excedrin for that pain or headaches, etc. Like you, tylenol never seems to do anything for me. The aspirin in it can upset my stomach sometimes, make my stomach acid go up, if I have been taking it too frequently.