legs

Hi Olivia,
has remicade helped your Crohn's symptoms yet and or how active is it since being off of pred? I have not used remicade, but I have been on humira. you should definitely talk to your doctors and even a rheumatologist. It could be a number of things from crohns related arthritis or rheumatoid arthritis since its in a lot of your joints. drug reactions are possible too and they can cause aching. There are lots of possibilities. A rheumytologist can better direct tests to understand which one it is. I am currently going through something similar with leg pain after using humira for about 9 months and I know how horrible it is. I am a grad student on a large campus and it's definitely not easy getting around. My doctors took me off the meds but they still are not sure whether that is helping of if it actually needs to be increased.

I'm so glad it has worked for you! I didn't use remicade but I did use Humira which is similar and it was amazingly helpful! My doctors won't let me back on it right now because I'm having some numbness and tingling and they are not sure why so I'm pretty sad about it because I get a lot of horrible flu like body and joint aches without it. Definitely ask for a referral to a rheumatologist if you don't have one either way because that is really the best doctor for joint pain and they deal with remicade and other autoimmune issues. My GI referred me to one ages years ago when I had crohns arthritis symptoms and now sent me back there with my new pains for advice. I'm getting an ultrasound of my joints late next month to check for arthritis. Some of these drugs cause that just as a side effect that is mainly an annoyance, hopefully someone else will come along who has been on remicade and had this. Let us know what happens!

I hadn't heard about it either in the beginning, I was diagnosed with crohns at 21, 27 now and had symptoms throughout atleast high school and before. I used to have a lot of knee pain that was unexplained. then once I knew I had crohns I realized it was happening right before a flare up and my knees and ankles would get warm and swollen as well sometimes. Finally a GI told me that it could be related to the crohns and sent me to other doctors. The only good thing if u want to call it that is that if it is "crohns arthritis" unlike rheumatoid it does not do perminent joint damage. Either way I'm really sorry to hear your having pain in your joints it's such a rough symptom especially at 18! But it does happen and with so many causes that it could be it might even be a deficiency in something that's causing it that maybe easier to fix. How are your B12 levels?

Sounds like it started after getting off prednisone. I have been on 5 mg forever it seems, and I feel terrible when I try to wean. Legs, back and body hurt. No energy. I forgot to put them in my pill dispenser this week and I thought I was getting reaction from cimzia or methotrexate. Feel much better today after restarting. Also, are you taking b12 or b complex. My friend took benfotiamine for similar symptoms as yours and he said it was like a miracle drug.

Did you notice any more or less trouble after the infusion?

Glad to hear they are a little less! Can they do the infusion any slower? I get that pain when I get IV iron infusions and they slow it down quite a it which lessens it. keep track of the symptoms and when they occur/get better/worse. If it's still bothering you though bring it back up to the doctor. I have noticed that sometimes it takes Several tries to communicate that your having a problem for them to really understand. The first time I had issues with my legs this summer I mentioned it but my GI didn't say anything about it. It started to get to the point where it affects my day so I called and asked his opinion and that's when he took it seriously.

I'm so sorry to hear that, keep me posted! If you don't like the doctors response please get a second opinion. I hope it gets better soon. I totally understand. my leg pain is making driving nearly impossible to drive and I just emailed my professor because I will have to stand for the entire class. It's painful but even worse to sit. Hang in there!

How did it go? We're they able to figure out what's wrong?