Super swollen feet, ankles and calves

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Regular Member

Date Joined Nov 2005
Total Posts : 319
   Posted 5/4/2009 6:58 AM (GMT -7)   
I am hoping someone can help me as my docs seem to be brushing it off.  I am just coming out of a super bad flare, and I just started Remicade again.
Just before I started my treatments again, I started to get major swelling of the feet, ankles and calves, to the point I cannot wear shoes.  I am wondering if anyone else has experienced this and what I should do about it.
I am currently on Remicade, and an antifungal.  And that is it...

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 5/4/2009 7:45 AM (GMT -7)   
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!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

Regular Member

Date Joined Nov 2005
Total Posts : 319
   Posted 5/4/2009 7:49 AM (GMT -7)   
Hum interesting.  Maybe I can do some protien drinks.  I am just coming off of a bad flare and was really not getting much nurishment.

Regular Member

Date Joined Jun 2006
Total Posts : 289
   Posted 5/4/2009 8:03 AM (GMT -7)   

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.
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition

Regular Member

Date Joined Nov 2005
Total Posts : 319
   Posted 5/4/2009 8:11 AM (GMT -7)   
I was off Remi for 4 months, I have only had one treatment again so far (my next is in a week), so I am sure that did not help. No steriods though, haven't been on those in years. I might go check out support socks after work. I hate the weird pressure feeling in my feet. I am at work and I do have them elevated under my desk, but still uncomfortable.

Regular Member

Date Joined Jul 2004
Total Posts : 422
   Posted 5/4/2009 9:03 AM (GMT -7)   
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.
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)

Regular Member

Date Joined Nov 2005
Total Posts : 319
   Posted 5/4/2009 10:21 AM (GMT -7)   
Wow I am going to have to search Crohn's arthritis. I did not even know it existed.

Thanks for all the info guys! I was starting to think that I was going crazy...

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 5/4/2009 10:34 AM (GMT -7)   
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!

Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.

Regular Member

Date Joined Aug 2007
Total Posts : 44
   Posted 5/4/2009 4:18 PM (GMT -7)   
Yep, I've had this several times. Like sammies, mine was caused by low protein (I think it's serum albumin, specifically, if you want to ask your doc about checking your levels). I know it's not from meds because I had it before I started taking any medication at all. According to my GI, it's a result of inflammation preventing proper nutrient absorption. When it happens I try to eat more protein and keep my feet elevated as much as possible (resting or even sleeping overnight with some pillows under my feet when it's really bad), but it usually goes away once I start getting healthier overall.

Regular Member

Date Joined Dec 2007
Total Posts : 131
   Posted 5/6/2009 10:42 AM (GMT -7)   
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.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 5/6/2009 10:52 AM (GMT -7)   
I LIKE BIG FEET,,, and I can not lie.. Ops, wrong words to the song. Sorry, my bad. Anyway, doc alwas checks my ancles for swelling before a remicade treatment as this is a sign of something wrong. If your doc is giving you the brush off ask him to tell you why. If you dont like the answer, time for a new doc..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Regular Member

Date Joined Oct 2008
Total Posts : 114
   Posted 5/6/2009 11:27 AM (GMT -7)   
According to, 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.

Diagnosed with Crohn's in July 2005. 2 Bowel Resections in 2008.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 100 mg/day (Blood Pressure), Remicade IV every 6 weeks, Omeprazole CR 40 mg/day, Percocet for pain, Lomotil, & Phenigren PRN

Regular Member

Date Joined Nov 2005
Total Posts : 319
   Posted 5/6/2009 12:47 PM (GMT -7)   
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...

Regular Member

Date Joined Mar 2009
Total Posts : 318
   Posted 5/6/2009 5:35 PM (GMT -7)   
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 smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

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