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Swollen ankles. Please help!

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Posted 1/24/2017 12:55 AM (GMT 0)
Hey Y'all
Been so busy with school and haven't had much time to write or read. I have been having swollen ankles for a while but when I tried on my shoes for clinicals they were too tight and I can't get em on.
Got to wear these specific types of shoes and don't have others.
Don't think I'm dealing with edema due to heart failure.
Have you had this issue? What caused it? How did you get it to go away?

Thanks!
Dikid
Posted 1/24/2017 2:07 AM (GMT 0)
I had good luck with lemon water when I was retaining a ton of water from pred. I am prone to leg swelling and it is no fun. Are you on steroids now?
Posted 1/24/2017 2:11 AM (GMT 0)
Thanks for your reply. Not on steroids. And I actually have been terrible at staying hydrated. Was in hospital a few weeks ago because I was super dehydrated. Been talking zofran to help me get hydrated but it's only minimally helpful.
Posted 1/24/2017 3:01 AM (GMT 0)
Are you having any other symptoms?
Posted 1/24/2017 3:09 AM (GMT 0)

ks1905 said...
Are you having any other symptoms?


Yes but not sure what is or isn't ibd related.

Evening fevers and chills , dizzyness, prolonged nausea, headaches , night sweats, joint pains, burning and infrequent urinating (probably concentrated urine because cultures were negative)
Bout 4-6 BM daily which is fine with me because they are not too painful

Whoa sound like a woman in menopause. Nope not preggers and I have been having my period.

Thanks!
Any insights would be nice
Posted 1/24/2017 3:51 AM (GMT 0)
We're much more prone to clotting due to our IBD, Deep Vein Thrombosis especially. Swelling in the ankles is a possible sign of a DVT, I'd see a doctor or nurse and go have it checked out. I hope I'm wrong but I had to throw it out there though just in case...

How's your activity levels? Are you pretty active or kinda sedentary (higher risk when not active)? We're also more prone when flaring.
Posted 1/24/2017 4:02 AM (GMT 0)
When was the last time that you were tested for Remicade antibodies? Also, were you having issues with side effects from the imuran? Maybe it's a combination of reactions from both meds.

How long have you been off of Entocort? Could last a few months if you were on a high dose for a long time. I've had a lot of water retention, infrequent and then very frequent urinating after steroid use.

I'd try make an appointment with the GI or at least contact the office to inform them and ask for help.
Posted 1/24/2017 4:45 AM (GMT 0)
Thanks for your reply.
Ipoop DVT makes sense. I have palpated thouroughly and I didn't feel any clots. I also did the homans sign for dvt and it was negative. I am a student but I do get moderate walking in.

Ks I was tested for remicade antibodies recently and it was ok
I also have done remicade every 4 and then 6 weeks for the past several infusions so levels are high.

I haven't taken the imuran in a couple of weeks because we are trying to see if that is causing the nausea.

Been off entocort for nearly 2 months. I was however on a high dose. I wouldn't expect it to cause same issues as other systemic steroids...

I haven't had frequency with urination but I haven't been drinking or eating much due to the nausea...

Thanks again for your responses. I really appreciate it.
Cheers
Dikid
Posted 1/24/2017 4:49 AM (GMT 0)
General malnutrition, in particular low protein levels, can cause edema. It is often in the lower limbs.
Sounds like you are not eating or absorbing much. Maybe use some nutritional drinks for a while, and yeah, avoid dehydration. It is hard when you feel nauseous.
Good luck.
Posted 1/24/2017 5:01 AM (GMT 0)
When I moved up my remicade from 8 weeks to 6 I had swollen ankles for a few months. Actually my whole legs were swollen. We did a lot of tests and my dr thinks it was a reaction to remicade and it ended up to be lupus from the remicade.

Luckily it went away after a few months. And all dr agree it's not a threat for me to continue treatment.

Shoe and clothing choice was key for me. No tight pants, leggings, socks or shoes that were tight. I had to wear open back shoes or loose boots like uggs. And elevation as much as possible. You can also try a water pill.
Posted 1/24/2017 5:15 AM (GMT 0)
Thanks!!!!!!


Ambling: this makes a lot of sense! Have hardly been getting nutrition in. i bought some nutrition shakes but they are hard on an already nauseated state
I'll try one again in the morning.

Kulinarykidz: even without antibodies you had that reaction? Could be that's causing my issues.
I honestly might have had swollen ankles for a while because I have been wearing the same pair of stretched out uggs for the past several weeks. And in the house I am wearing knit booties which aren't very constructing. Could be those have been hiding it. Really only noticed when I tried putting on my shoes for clinical and I was having issues getting em on
Posted 1/24/2017 5:22 AM (GMT 0)
Are you noticing any redness in your face or rashes on your body? That's why my dr sent me for lupus tests. He saw my swelling and the lupus butterfly on my face and put that together with my joint pain and voila....positive for lupus. You may want to get the blood test or see a rheumatologist.
Posted 1/24/2017 5:27 AM (GMT 0)

Kulinarykidz said...
Are you noticing any redness in your face or rashes on your body? That's why my dr sent me for lupus tests. He saw my swelling and the lupus butterfly on my face and put that together with my joint pain and voila....positive for lupus. You may want to get the blood test or see a rheumatologist.

Not really when I have a fever my face gets flushed. But not butterfly rash and no excema flare ups.
I'm seeing my derm tomorrow and can bring up if it fits in convo

Thanks again
Muchly appreciated
Posted 1/24/2017 1:32 PM (GMT 0)
Have you been checked for blood clots? There is a correlation between clots and UC, hopefully thats already been ruled out.
Posted 1/24/2017 5:54 PM (GMT 0)
Hey Dikid. I am with KKids and KS. I think it may be a reaction to the remi. I am having some similar issues. Nausea, abdominal pain/cramping, joint pain. It goes away around 3 weeks after infusion (on 6 wk interval). And then I feel terrific (I am in remission right now). I'm convinced its a reaction to the remicade. Had my levels checked and I am at 30 which I'm told is very high. And antibodies aren't an issue.

You said you had high levels the last few tests? Do things get better at any point during infusion schedule or are the symptoms constant?

My GI and I are dropping the dosing to see if things get better but keeping the same frequency. Re-evaluate symptoms and re-test remi levels/ab.

I hope this helps.
Posted 1/24/2017 6:11 PM (GMT 0)
Thank totes. My doc didn't tell me the value just that it was ok and no antibodies. After that he accelerated the dose did 2-3 at 4 weeks apart and now I'm doing every 6 weeks at 10mg/kg.
Getting infusion on Friday so will see how i respond
If nausea gets worse then I will bring this up
Posted 1/24/2017 6:18 PM (GMT 0)
Dikid

I was on Entocort 6 mgs for many months and it did effect me systemically, puffy face and increased appetite. Not as bad as Pred but I definitely had side effects and withdrawal.

I wouldn't be surprised if you're getting side effects from multiple meds.
Posted 1/25/2017 7:02 PM (GMT 0)
Hi Dikid, I've been having similar issues in the last year. I'm a nurse anesthetist so am also on my feet. My pcp thought I was having some venous insufficiency so I ordered rx strength custom compression hose and what an improvement. The first round of hose weren't high enough compression so I asked for stronger hose and they have made all the difference. I was having major swelling of my feet and ankles. I do have an old injury from college that makes my right foot swell but I was having the same problem as you...not able to get my shoes on. And I have narrow feet usually! Haha. My doc did have me get an echo but I'm in my 40's and he was just covering all the bases.

Are you doing a lot of clinical time? Have you been on your feet more than normal? Any SOB? Is the swelling bilaterally equal? You're confident no DVT? I think you would know since you're in nursing school. I've had 2 clots in the last two years and I knew I had a clot. It was in my arm and it hurt the skin simply to pull my sleeve up. I'm also on remicade but haven't considered that causing fluid retention. Maybe it does but I'm unaware. For me, I think the trigger was prednisone.
Posted 1/25/2017 8:53 PM (GMT 0)
thanks for the replies!

KS- guess some people do get fluid retention, maybe we are of the lucky onessmile
I wouldnt be surprised if the multitude of meds are messing with me




platinumpixie said...
Hi Dikid, I've been having similar issues in the last year. I'm a nurse anesthetist so am also on my feet. My pcp thought I was having some venous insufficiency so I ordered rx strength custom compression hose and what an improvement. The first round of hose weren't high enough compression so I asked for stronger hose and they have made all the difference. I was having major swelling of my feet and ankles. I do have an old injury from college that makes my right foot swell but I was having the same problem as you...not able to get my shoes on. And I have narrow feet usually! Haha. My doc did have me get an echo but I'm in my 40's and he was just covering all the bases.

Are you doing a lot of clinical time? Have you been on your feet more than normal? Any SOB? Is the swelling bilaterally equal? You're confident no DVT? I think you would know since you're in nursing school. I've had 2 clots in the last two years and I knew I had a clot. It was in my arm and it hurt the skin simply to pull my sleeve up. I'm also on remicade but haven't considered that causing fluid retention. Maybe it does but I'm unaware. For me, I think the trigger was prednisone.


I have been standing on my feet but I started in august, if anything im on my feet less.
I havent had SOB in the past several weeks and the swelling isnt bilaterally equal, sometimes the left ankle gets more swollen
there is some pain but not what I would expect with DVT
I have done homans and palpated and didnt feel anything abnormal

I was on Entocort but most people dont get fluid retention from that... although some do, and I was on a higher dose (15 mg). Have not taken it since the end of November
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