Super swollen feet, ankles and calves

YES!! I too experienced this. My doc thought it was the humira and the humira people told me to ask my doc. No answer. My doc did a rheumatoid panel that came back negative. After my surgery, the surgeon explained it as stemming from low protein and malnourishment. Told me to keep my feet elevated as much as possible and to bump up the protein. Now, 8 weeks after surgery it has improved some but still has a way to go.

I hope you find an answer. Good luck!

KarineB,

Have you recently been on steroids? I had similar problems a couple of years ago. Doc put me on a diuretic, started wearing support socks, kept my feet up & wore extra large slippers instead of my shoes. Eventually, the swelling went down. I haven't had any swelling problems since I've been on Remi though.

I've never been on Remicade or Humira but my ankles sometimes swell to the point that I can't walk or drive.  Swelling ankles for me is a sign I'm getting ready to go into a flare.  It usually starts in my right ankle then moves to my left ankle.  My ankles get hot; swell to the size of a lemon; I can't stand on them (if I'm lucky I can hop, otherwise I've got to get out the crutches) and they are painful to put pressure on, too.  The swelling ususally lasts up to 2 weeks.

When the swelling ankles first happened in 2004, I had not been diagnosed with Crohn's yet so my family doctor couldn't figure out why my right ankle was so badly swollen.  He was certain I must have twisted it but I assured him it had started swelling on its own just 2 days before. They X-rayed it but nothing showed up.  The Radiologist was stumped, too.  

After my Crohn's diagnosis, I did A LOT of research and found out about Crohn's Arthritis.  Last year when my ankles swelled again, I asked my GI to send me to a Rheumy as even my GI had no idea what the swelling ankles would be from (but ironically, his Nurse Practitioner did!).  The Rheumy immediately said it was Crohn's-related Arthritis.  She said it was possibly and most likely in the category of Ankylosing Spondylitis.  She said an X-ray wouldn't show anything as it wasn't my ankle JOINTS that were swelling but instead the TENDONS attached to my joints.  Only an MRI would show that damage.

I couldn't wear shoes either.  Flip flops or bedroom slippers were all I could do once I was able to put any pressure on my ankles to limp around.  Every time my ankles have swollen since 2004, it has taken 2 weeks for the swelling to go down enough for me to hobble around...then another 2 weeks before I can walk without anyone knowing I've got a problem.

 

I had some odd swelling last year with a flare. My thumb, lower part of my hand, the bottom of my foot, and then my bottom lip all swelled up. My doctor contributed it to a flare, since my inflammation rates were through the roof. It was just so odd, but it all went away with prednisone once I got the flare under control. Scary though!

To this day I worry about things swelling up!

Yes, my feet were terribly swollen before I went on Remicade. Seemed to coincide with my Crohn's arthritis. I went to multiple docs including a rheumy and they all pretty well scratched their heads.

Mine started when I took Cipro and my feet and ankles became swollen and painful that night. It was hard to get rid of it after that. Fortunately, they are back to normal now since going on Remicade.

According to WebMD.com, swelling in the feet and ankles is a side effect of the Remicade. The following comes directly from their Side Effect Tab for Remicade:

Tell your doctor immediately if any of these rare but very serious side effects occur: swelling ankles/feet, easy bruising/bleeding, vision changes, seizures, confusion, muscle weakness, numbness/tingling of arms/legs, butterfly-shaped facial rash, chest pain, pain/redness/swelling of arms or legs, shortness of breath, fast/slow/irregular heartbeat.

I would definitely find out why your doc is not taking this seriously. Like Sniper said, if he/she continues down that path, it may be time to find another doc.

KarineB said...
The feet swelling did start before I went back on the Remicade, so I am pretty sure it is not that. That would be horrible as it is the only thing that works!

I think my doc is more just exasperated by my case. I have a serious flare, got histoplasmosis in December in my lungs and liver.

It is just so hard to find a good doc there just aren't a ton of them...

Hi Karine you know when i read this post i thought i wasn't the only one out there with this i have swelling in both feet and up the legs almost to the knees to the point that it hurts to walk but i also wake up with face swelling the lids of my eyes checks E.T.C went to the doctors several times with this problem and they figured i was in kidney failure they tested me kidneys through cat-scan and dye and my enzymes kidney and liver functions to no eval,but i'm going back to a kidney doc soon they did put me on a diuretic which helps me a bite i don't think its from remicade but it could be try going to the ER and see what a different set of eyes tell you good luck. Jenn