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Posted 3/27/2017 3:30 PM (GMT 0)
Hi Everyone,

I have seen some threads over the years about peripheral neuropathy. The internet is full of conflicting information on PN and IBD. Figures range from 0% to 30% of people with IBD report peripheral neuropathy. I have been experiencing a lot of tingling in my hands and sometimes my feet and have no idea what to do about it. It comes and goes, but has become more steady. I had a recent physical and reviewed the blood test results with my PCP. I asked her about the tingling and, surprise surprise, she had no idea what could be causing it and just said not to worry. Maybe a pinched nerve, she said, who knows?

Has anyone actually gotten to the bottom of their neuropathy? I don't know if I should be putting more pressure on my doctor about it. I just had a physical and all the standard blood work came back fine. No diabetes but I didn't have a B12 test. Vitamin D was a little low. Does PN constitute having an MRI?

I have a couple other odd symptoms going on, including sporadic fluttering in my chest as well as ear pressure with a sensitivity to sound (I saw an ear/nose/throat doctor who could not give me any answers but gave me nose spray). I have indigestion frequently along with a lot of burping and some mild proctitis. I really hate these 'gray area' health problems.
Posted 3/27/2017 9:39 PM (GMT 0)

Uniform Charlie said...
Hi Everyone,

I have seen some threads over the years about peripheral neuropathy. The internet is full of conflicting information on PN and IBD. Figures range from 0% to 30% of people with IBD report peripheral neuropathy. I have been experiencing a lot of tingling in my hands and sometimes my feet and have no idea what to do about it. It comes and goes, but has become more steady. I had a recent physical and reviewed the blood test results with my PCP. I asked her about the tingling and, surprise surprise, she had no idea what could be causing it and just said not to worry. Maybe a pinched nerve, she said, who knows?

Has anyone actually gotten to the bottom of their neuropathy? I don't know if I should be putting more pressure on my doctor about it. I just had a physical and all the standard blood work came back fine. No diabetes but I didn't have a B12 test. Vitamin D was a little low. Does PN constitute having an MRI?

I have a couple other odd symptoms going on, including sporadic fluttering in my chest as well as ear pressure with a sensitivity to sound (I saw an ear/nose/throat doctor who could not give me any answers but gave me nose spray). I have indigestion frequently along with a lot of burping and some mild proctitis. I really hate these 'gray area' health problems.

Neuropathy can also be a side effect of the meds for UC. It's rare but it's listed under the side effects for mesalamine and I get tingling, numbing and muscle and abdominal pain from many of the mesalamine meds, including balsalaside. It is considered a rare side effect so it may not be in your case. You can see a rheumatologist to rule out other autoimmune issues as well.
Posted 3/27/2017 10:16 PM (GMT 0)
Has anyone actually gotten to the bottom of their neuropathy?

No. It started a few years ago for me - it seemed to get a lot worse after my first surgery. Also had problems with hot feet and restless legs at night. My antidepressant (duloxetine) mostly stopped the tingling, but not the restless legs unfortunately.

I know I don't have diabetes; my blood sugar is good. B12 has always been at the low end of normal range.
Posted 3/27/2017 11:58 PM (GMT 0)
I have neuropathy in my feet either from humira or autoimmune trigger while on humira. Your PCP seems flippant regarding your symptoms. If insurance allows, I suggest you see a neurologist for evaluation of your symptoms.
Posted 3/28/2017 12:08 AM (GMT 0)
Mine went away after I stopped the anti-Tnf meds like Remicade, humira, Simponi and Cimzia. They all gave me neuropathy
Posted 3/28/2017 1:08 PM (GMT 0)
My husband started to experience neuropathy primarily in the feet when finally getting off of prednisone after 3 years. It is not so bad that he is in pain or disabled, but it doesn't feel good and is upsetting. He is super slowly tapering off prednisone (.5 mg every 6 weeks) and every time he goes down a little, the neuropathy feels as if it is getting worse.

Neurologist suspects the neuropathy is associated with the IBD and the prednisone was masking it. But he is now in full remission on the IBD. (She also thought some numbness he was complaining of in hands is carpal tunnel syndrome and recommended sleeping in a wristbrace)

Neurologist recommend vitamins -- he is currently on B1, D3, B12 and has been getting a B12 shot every month. She took him off a B complex because of concern that he may have too much B6. It is a balancing act with the vitamins, and I think you have to be careful in terms of proper dosing.

We like our neurologist, but she doesn't have an answer in terms of whether this will be permanent etc.
Posted 3/28/2017 1:21 PM (GMT 0)
if it were me, i'd start tapering off the Lialda - not exactly the highest ranking suspect, but one never knows till they try -
Posted 3/29/2017 3:24 AM (GMT 0)

soynomore said...
if it were me, i'd start tapering off the Lialda - not exactly the highest ranking suspect, but one never knows till they try -

Yes, it is a rare side effect of mesalamine so you can try it out. I got neuropathy in my right arm from balsalaside but continued with it to get out of a flare :-(
Posted 3/29/2017 4:38 PM (GMT 0)
Jane, did the neuropathy go away after stopping the 5-ASA?
Posted 3/29/2017 11:12 PM (GMT 0)

Uniform Charlie said...
Jane, did the neuropathy go away after stopping the 5-ASA?

I'm still on it because I had a recent flare and I'm waiting to get a colonoscopy in a few days to see if I am safe to get off the meds so I'll let you know once I eliminate it. It's mild neuropathy that started after taking balsalaside but I get worse side effects from the other UC meds so this is the lesser of the evils. It does not hurt or anything. Delzicol caused really acute stomach cramps and other more painful side effects so I can tolerate this temporarily.
Posted 4/3/2017 5:40 PM (GMT 0)
Sorry I have not been checking replies for a few days. I am giving lialda a break. I took my last dose 2 days ago. So far today the tingling is minimal. I was terrified the other night when my entire leg and part of my face went tingly. Was convinced I was dying or had MS. I'll update in a week or so.
Posted 4/6/2017 6:11 AM (GMT 0)

Uniform Charlie said...
Sorry I have not been checking replies for a few days. I am giving lialda a break. I took my last dose 2 days ago. So far today the tingling is minimal. I was terrified the other night when my entire leg and part of my face went tingly. Was convinced I was dying or had MS. I'll update in a week or so.

That's great to hear. Update us.

My update: I went off balsalaside 3 days ago and the tingling, neuropathy, and muscle/join pain is about 80% better and almost gone!!! My headaches and abdominal pain have also mostly disappeared! I feel way, way better and less fatigued.

Since i'm in remission, I'm trying the enemas as a standalone right now to see if I can tolerate them. I can't seem to tolerate any of the mesalamine meds even at low doses. I forced myself to take it for 2 months just to get into remission and it was hell.
Posted 4/6/2017 11:40 AM (GMT 0)
Look into B vitamins which might help or in some cases excess may cause.
That is all I remember from researching it about 3 years ago.
I got the super duper 3x strength flu shot 3 years ago, and it started in my legs about
a week after the shot.
Might have been a mild case of Guillain-Barr'e syndrome, it went away after a few months,
but scared the crap out of me.

Old Mike
Posted 4/6/2017 3:47 PM (GMT 0)
Have you had b vitamins and vitamin D checked?

q
Posted 4/6/2017 4:54 PM (GMT 0)
D was on the low side of normal. I went in to my PCP again and had my B vitamins checked and a Lyme disease screening. Awaiting those results.

Physician suspected anxiety as the #1 possibility, the lialda as the #2, and MS as the third. She would not order an MRI. Stated that I needed to wait and see how this plays out and if it is MS, I would need two separate occurrences separated by a period of time before a definitive diagnosis. I plan on finding a neurologist for another opinion.

The tingling has lessened since stopping lialda but not yet enough to draw any serious conclusions. I want to give it a full two weeks, barring a UC flare up, before I reintroduce it.
Posted 4/9/2017 5:06 AM (GMT 0)
Well, is neuropathy just tingling in the extremities or does it include other things? I have been on Cipro and Flagyl for the past 2 months and have noticed some minor vertigo/equilibrium issues. Does that count as neuropathy?
Posted 4/10/2017 3:08 PM (GMT 0)
If it doesn't go away, then I think you will feel better once you see a neurologist. We saw two and decided on one. All are intrigued by neuropathy associated with the UC, because there have been some studies connecting the two. It can be associated with various autoimmune diseases, or it can be related to nothing. Given the drugs you have been on and the UC, MS connection sounds unlikely. The best news we have heard from both neurologists was that the neuropathy doesn't appear to be connected to any obvious disease / condition that would be a worry.

The neuropathy continues to get a little bit worse every time husband goes down by .5mg of prednisone, but UC is in full remission. We are trying different types of vitamin B and D combos. I would not do that on my own -- doc will have a few about right levels about which vitamin. Neurologist will probably recommend B12 shots.

Desertfox -- I don't think the vertigo/equilibrium is neuropathy.
Posted 4/10/2017 9:34 PM (GMT 0)
Just curious, Suzy, did you bring up the association between UC and neuropathy with the neurologist or did they bring it up?
Posted 4/10/2017 9:51 PM (GMT 0)
UC was in the medical history, and both docs brought up the possible connection to UC. We have a neurologist acquaintance who also was aware of the connection. When I did some digging I found an article that debunked the theory that the two were connected, but there were so few participants in those studies, and as you know, approaches to UC are really just a big science experiment. If you do a google search on neuropathy and autoimmune diseases there are lots of supposed connections.
Posted 5/18/2017 6:53 PM (GMT 0)
Just an update. I had to wait several weeks to see a neurologist. Found one I like who came highly recommended. I described my symptoms and he was on the fence on whether or not we should do an MRI. A week went by and the bottom of my chin suddenly went numb. Apparently this can be a sign of metastatic cancer (according to google) and made an MS diagnosis more of a possibility. Called the neurologist and he ordered an MRI. Long story short, the MRI came back fine. When he gave me the results he said he is obligated to do imaging when there is chin numbness. We are in a wait and see mode now.

I am still experimenting with my Lialda. When I stopped for two weeks, the tingling in my hands and feet got much better. Then I started it up again and my chin went numb shortly after but the hands and feet never really seemed to get as bad as they were. Going off again to see what happens.
Posted 5/20/2017 1:49 AM (GMT 0)
Hi,
I had neuropathy in my feet due to being on Flagyl much longer than necessary - almost a year to be exact! I stopped taking it about 4 years ago and my neuropathy has pretty much dissipated. It takes a long time for nerves to heal.

Mine was pretty severe and scary at times, one time I actually got into a slight fender bender on my way to work, because I couldn't feel which pedal I was pressing!

I did see a neurologist and the testing I went through was pretty cool and weird at the same time. I definitely recommend getting it checked out.

Good luck with everything!
Posted 5/21/2017 12:53 PM (GMT 0)
Thanks turtle. What tests did they run? I want to make sure my neurologist is thorough when I see him in 3 weeks.
Posted 5/22/2017 11:36 AM (GMT 0)

Uniform Charlie said...
Thanks turtle. What tests did they run? I want to make sure my neurologist is thorough when I see him in 3 weeks.

Since my issues were in my feet, I had to some basic balance tests. Walking toe to heel in a straight line, standing on one foot.

After that, I had some tests where I was hooked up to an EMG. Little electric shocks were sent to my fingers and then again on my feet. This was to test if 1) I could feel the shock (I did) and 2) to evaluate my nerves. After reviewing the tests a few weeks later, the doc said my neuropathy was bad, but not bad enough to warrant a prescription and suggested the nerves heal on their own. She was more shocked I was allowed to be on flagyl for so long!

Let me know if you have any other questions.
Posted 5/22/2017 4:57 PM (GMT 0)
Thanks again TP,

It's in my face, lips and tongue yesterday and today. Really freaking me out. I work a physically demanding job so that just adds to my stress level fearing I won't be able to support my family and all if things progress.

Seeing my gastroenterologist this week to pick her brain. I'm glad things worked out for you. Hopefully this will just pass.
Posted 5/22/2017 6:38 PM (GMT 0)
My husband had EMG, and various vitamin B and D levels checked, and some other bloodwork but I don't have the paperwork with me. Neuropathy hasn't gone and gets slightly worse in terms of spreading (feet, feeling a little slightly in face) every time he goes down .5 mg of prednisone. It is numbness. We have been seeing neurologist every 3 months.
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