Hi I'm New Here !!!

[Annek1207]

:sign0085::sign0085::sign0085::sign0085::sign0085::sign0085:Hi Everyone !
My name is Anne and I've suffered with Crohn's for about 20 years but only badly in the last 5. I'd been to my Doctor who ignored the fact I was in pain and that my bloods were elevated for about a year and basically made me feel like it was all in my own head. Finally I was sent for a scope and The surgeon referred me to a Doctor in the Capital and thankfully I was diagnosed .
I got really sick and she admitted me. For the first time in years I felt somewhat normal.My temperature was brought under control. I even had a transfusion and I was put on Iron I had a flare up 3 weeks ago and I didn't get any help from either doctor .Now for the 2nd time in 3 weeks my Knees have swollen up 1st time doctor drained them. He tried yesterday to no avail there seemed to be no fluid to come out of them.( Even though they are very swollen and they hurt like hell) So he's referred me to have an Xray in the morning. I'm sorry for going on and on !!!!
Since my flare up my Crohn's specialist has taken me off Imuran and my own doctor has made no indication that I will be going back on it. I'm terrified that this will cause me to have more flare ups than before. So firstly I'd like to know if anyone has ever experienced fluid on their knees to do with the Crohn's and Secondly if they having been long term on a immunosuppressant drug to be just taken off it without a replacement ?
Thank you for taking your time to read this. I apologize if its long winded but its my first time to become part of a Forum !:sign0085:

 

[24601]

I have suffered from swollen and painful knees when I've been on steroids and when my albumin was very low. No one ever wanted to drain them though so it may have been much less severe than what you are experiencing or something else altogether!

Did the doctor explain what they think is happening with your knees and the cause?

My concern is that they might just be treating a symptom and not the cause but hopefully further testing will give a clearer picture.

It does seem very unusual to me that they would take you off your one Crohn's med without putting you on another treatment if this is a Crohn's flare up. Did they do tests to see if you are having increased inflammation and disease activity? Blood tests and fecal calprotectin for example or bowel imaging. Because if it's a flare you would expect to be treating that with either steroids, exclusive enteral nutrition or infliximab.

I would ask your doctor specifically what their reason is for stopping the Imuran. It could be that they were concerned about levels from your blood tests but they should have explained that to you clearly because you shouldn't be left in the dark and worried and it's understandable that you are concerned about stopping a treatment that has kept you relatively well until now.

And they should also explain the plan for treating this flare - or why they don't think it's a flare.

I hope you can get some more answers from your doctors!

 

[POTTYTIME!]

I have swelling in my ankles not the knees. But I have been on prednisone for 2 months now. I just started to taper down from it on friday. Also on pentasa and humira injections. Thats weird they would take you off of a medicine and not replace it with something. Im waiting on a surgery date due to none of the meds work and I have fistulas. Praying for the best for ya.

 

[grahamburgers]

Hi Anne!

Unfortunately, none of us can explain what your doctors are doing. They can though. One of the hardest things I had to learn to do when I was first diagnosed was to be the one in charge of my treatment -- and by that I mean, don't assume the doctor knows what he or she is doing. They probably have their reasons, but if it doesn't make sense to you make them explain it. Ask questions, demand answers.

It helps if you can bring along a friend or relative to your appointments, especially because being the patient can be somewhat overwhelming. It's your body, and your treatment. Your doctors are working for you, so if something doesn't make sense to you have them explain it or just tell them no. You're the boss.

I will say -- if you're flaring up, taking you off the medicine that's supposed to keep things under control makes sense, since it's not working too well. Not putting you on another one doesn't make a lot of sense but maybe they need to wait until the imuran is all out of your system? Again, this is something you'll have to ask your doctors, but it's the best I can come up with. What other medicines have you been taking, if any, aside from the imuran?