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Posted 11/28/2011 1:00 AM (GMT 0)
i started prednisone in august and finished up nov 6. i had a lot of tingling and numbness in my feet and i assumed it would go away when i stopped prednisone. well, i still have it and i don't know what to do. i've brought this up with my gastro and pcp and both say it's normal. i just wish i knew how to stop it. it never goes away and it makes it really hard to sleep at night. am i going to be stuck with this forever or is there some sort of specialist i can see? could it be my other drugs that cause this- 6mp or remicade?
Posted 11/28/2011 1:17 AM (GMT 0)
bananagirl,

Joanna, I'm sorry about your feet being numb.

When the doc said it was "normal", what did he mean to relate that to: prednisone? 6mp? remicade?

My left leg started going numb last week too, and that's on top of the neuropathy that just started in both my feet 2 weeks ago ( no, I'm not diabetic) - so I really don't know what's going on. I assumed it was related to malabsorption of nutrients.

Besides your feet being numb, how are the rest of your UC symptoms?

How have you been feeling?

Posted 11/28/2011 1:28 AM (GMT 0)
insofla, my u.c. is pretty under control. i have a bunch of other side effects from the drugs, but i'm glad that it's not u.c. related. i have to be very careful of what i eat though. it always seems that grains give me the most problems so it's best for me to avoid them.

the doctors said feet numbness is normal for prednisone users. i asked them when it would go away, and neither of them knew. i am praying it does though. it's just really annoying and uncomfortable. i am thinking that during my first month on prednisone, my feet were so swollen that maybe some nerves died. i gained about 40 lbs of water and a lot of it was in my lower limbs. i am never taking that drug again.

is it your entire leg? that is very weird. typically, swollen feet are a sign of lack of protein, but i don't know why an entire limb would go numb. maybe you should have a blood clot test done on your limbs?? i got one in september and it was really easy- just an ultrasound of your legs/feet.
Posted 11/28/2011 1:32 AM (GMT 0)
Are you active? Mine get numb if I sit in the same position for a very long time. I am surprised your pcp wasn't more helpful in finding an answer.
Posted 11/28/2011 1:36 AM (GMT 0)
notsosickly, i am very active. i usually try to move around a lot so i don't notice the numbness as much. it doesn't make it go away though. it just stays.
Posted 11/28/2011 1:41 AM (GMT 0)
bananagirl,

 grains give me the most problems so it's best for me to avoid them.

Yes, grains are a definite problem for many (me included).

Didn't you try the SCD diet at some point?

the doctors said feet numbness is normal for prednisone users

Really, when they gave me prednisone, they never told me about that side effect? I wonder how long after finishing prednisone can you get the feet numbness?

is it your entire leg? that is very weird. typically, swollen feet are a sign of lack of protein, but i don't know why an entire limb would go numb. maybe you should have a blood clot test done on your limbs??

No, it's not my entire left leg, just from the knee down. I had a blood clot test a few weeks ago, came out negative. Lack of protein - didn't know that. I eat a protein rich  diet. I don't know.

Posted 11/28/2011 5:25 AM (GMT 0)
insofla, i have not tried SCD. i don't eat meat and i know the diet is pretty supportive of it.

my numbness started in the hospital when they first had me on iv steroids. it has stayed with me since and it's just constant now. my doctors didn't seemed concerned about it at all. i've brought it up at every appointment since august and nobody ever wants to send me to a neurologist. i am gonna ask my pcp if she has a referral to one. i don't wanna end up suffering so much nerve damage that i'll have to get an amputation some day.

i have been looking up treatments for this online and found trigger point therapy. i am gonna see if my library has a book about it. apparently, there are trigger points in your chest that deal with foot numbness. i also read that capsaicin is used a lot.
Posted 11/28/2011 1:00 PM (GMT 0)
bananagirl,

Yes, not eating meat would be difficult on the SCD for you as a vegetarian. I understand that.

I am on more of a Paleo diet - which is a known anti-inflammatory diet. But that diet too is more meat oriented as well.

Remember Joanna, you have to be your own best doctor. If you feel the docs aren't paying enough attention to your complaints, make them hear you. And I do think it's a great idea to go see a neurologist and get it checked out.

Let me know how the trigger point therapy works for you. Is it similar to accupuncture points?

Posted 11/28/2011 1:25 PM (GMT 0)
I experience leg numbness as well on pred....i was told that it was a result of low potassium in the body....as low potassium can cause numbness....try a banana and see if it helps maybe?
Posted 11/28/2011 4:16 PM (GMT 0)
insofla, i have an apt. with a neurologist in february! i didn't realize how long it would take but i'll just tough it out til then. apparently, this group of doctors is in the top 5 in pittsburgh so i hope it's worth it. i'm gonna go to the drugstore and pick up some capsaicin cream though.

uc-v, that is interesting. i do eat A LOT of potassium. i had about 15 medjool dates and 12 bananas yesterday ahhh
Posted 11/28/2011 4:32 PM (GMT 0)
The tingling and numbness should subside as you eliminate various possible causes of your peripheral neuropathy. That would include various medications, including some antibiotics; also alcohol, tobacco, sugar if you have impaired glucose tolerance, etc. My GI said that 50% of people who present with peripheral neuropathy turn out to have diabetes, so it's a good idea to rule that out.
Posted 11/28/2011 6:47 PM (GMT 0)
thethinker, i get blood work done pretty often and my glucose seems to be a non-issue. i do not smoke, drink, eat a lot of refined sugar, and am not overweight/obese. i was on antibiotics for a week in august though. are there associations with that??
Posted 11/28/2011 8:31 PM (GMT 0)
I don't think a week of antibiotics should harm anybody, but IANAD. Best thing do while waiting for your doc's opinion might be to read up on peripheral neuropathy. There's tons of material out there. What's fascinating, kinda, is finding out how many things cause PN. Lomotil for example. Perfect eh? Flagyl is supposed to be a good antibiotic for people with UC, but of course it causes PN in those who are susceptible. I was telling my neurologist that my PN was from 5ASA and he couldn't really believe it. He said "Only 2% get it!" Naturally, I'm one of that 2%, thanks to decades of alcohol abuse, and a bout of chemo 3 years ago. Now all I need to do is drink a bottle of beer and my feet get noticeably number/more painful the same day.

It looks like the only way to get free of PN and colitis is to research natural treatments and find one that works for you. If possible. Slippery elm is a wonderful anti-inflammatory that works better than the 5ASA I was taking (and not tolerating). Only downside is that it exacerbates my PN, just as bad as 5 ASA. That might not hold true for everyone though.

Here's another Healingwell link on the issue:

https://www.healingwell.com/community/default.aspx?f=17&m=1901774

Post Edited (the thinker) : 11/28/2011 1:35:16 PM (GMT-7)

Posted Yesterday 7:18 AM (GMT 0)
"PN ranks among the most frequent neurological complications seen in IBD patients."

http://brain.oxfordjournals.org/content/128/4/867.full
Posted 10/8/2012 1:53 PM (GMT 0)
i figured i'd revive this thread. my PN has been back ever since i started 6mp again in august. it has been traveling up my right leg now and i'm worried. i told my doctor about the PN but she basically brushed it off and didn't give me any suggestions for it. i saw a neurogolist in february and nothing was wrong- got that bee-sting shock test and an ultrasound. everything looked fine.

insofla, did your PN ever go away?
Posted 10/15/2012 2:56 AM (GMT 0)
The heels of my feet would go numb and burn with pain, this started during my first flare of ulcerative colitis 8 years ago, before remicade and prednisone. It got worse over the years, to the point of unbearable. I had my first stage of the J-pouch procedure June 25, following the procedure the pain in my heels went away, along with arthritis in my knees and back. There are many problems that I had that I did not consider to be related to my ulcerative colitis, but since the surgery, I feel like a new person. These pains I had occurred even when I was not in a flare.
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