Share Facebook
Crohn's Disease Forum » General IBD Discussion » Neuropathy from ???


04-29-2015, 09:06 PM   #1
dman9271
 
Join Date: Apr 2015
Neuropathy from ???

Hello,

I have had crohns for almost 20 years, diagnosed when I was 13 yrs old. I have been through just about everything with this awful disease, from two surgerues to almost every drug on the market. I had a flare up this past January and was hospitalized. Apparently humira stopped working after 5 years on it. While in the hospital they started me on prednisone (20 mg 2x a day), flagyl, cipro, and entyvio. I was discharged and told to continue to take the steroid and the 2 antibiotics. The cipro was removed quickly as a I started to have bad symptoms but my GI told me to stay on the Flagyl (250 mg 2x a day) and the prednisone. About 3 weeks ago I stated to develop extreme pain in my feet. I would get shooting pain, numbness, tingling, and hyper sensitive to touch. To this day, the pain has gotten worse. It is extremely hard to walk and I can only sleep at night if I take Percocet. My GI referred me to a neurologist who hasn't said for certain it was because of the flagyl but he did do blood work and an EMG which were normal. He wants me to take a drug called Gabapentin 3 x a day at 300 mg each. I am afraid to take it as I have read some pretty nasty side effects.

I am basically reaching out for some help. I don't know to do. The more I read about neuropathy the more I get scared. I have read that it is irreversible if it was from flagyl. I can't imagine living like this forever as even walking is so very difficult. Has anyone else experienced these kinds of issues? I welcome any advise! It has already been 3 weeks and I feel like it is getting worse !

Thanks for reading.
04-30-2015, 12:45 AM   #2
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I have not had this . Kind of trouble but, check y o it but d levels.

I read enough about in here, talked to my Dr. My level was 18. I do have a spot on my toe that's numb. That's from the low vit D


Hope thus helps,


Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
04-30-2015, 03:01 AM   #3
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Also get your B12 checked
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-30-2015, 08:49 AM   #4
dman9271
 
Join Date: Apr 2015
They checked all my vitamin levels and said everthing was fine. The pain and numbness is unrelenting. I have had no relief for almost a month now!
04-30-2015, 09:42 AM   #5
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Flagyl can cause these problems. Hope they won't be permanent. The other drugs can also cause neuropathy. Happened to me on Humira.

Have you seen a neurologist for a nerve conduction study?
04-30-2015, 05:41 PM   #6
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
I got peripheral neuropathy from Flagyl four years ago. I don't have pain, but numbness and tingling 24/7. It started from my toes, and over time continued up to my knees, and for a while my fingers were numb as well. I used a cane for a couple of years, because I'd stumble a lot. Four years later, it's only on the bottoms of my feet, and I hope it will eventually disappear completely. I tried a couple of drugs for it, can't remember the names, but the side effects were too awful. I basically slept with my feet sticking out at the end of the bed with no covers on them for a couple of years. I found that the more I was on my feet, the worse it would get, so I gave up hiking for a long time. It could take a while to get better, but it's not necessarily permanent.
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
04-30-2015, 06:51 PM   #7
Robrich
Senior Member
 
Robrich's Avatar
 
Join Date: Oct 2012
Location: SoCal

My Support Groups:
I have peripheral neuropathy also from the Flagyl. Just tingling and numbness in my feet. No pain.
Over time Most of it came back. B vitamines help.
Recently got more from cipro. That doesn't go away as easily
I would definitely stop the flagy. You could Try augmentin or bactrim in its place
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
04-30-2015, 07:01 PM   #8
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
What was your specific vitamin B12 level when they tested it?
__________________
It's good to be back
05-01-2015, 12:45 AM   #9
Robrich
Senior Member
 
Robrich's Avatar
 
Join Date: Oct 2012
Location: SoCal

My Support Groups:
Never tested for b12. My doc said it wouldn't come back. I took sublinguals and after about 6 mos I noticed a significant improvement. it wasn't just the Bs but they helped a lot.
05-01-2015, 09:28 AM   #10
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Anyone with Crohn's disease of the small intestine should have their B12 tested at least once a year and keep track of the trend. Deficiency is far too common and easily fixed. Yet the negative repercussions are huge if not properly treated.
05-01-2015, 11:20 AM   #11
Robrich
Senior Member
 
Robrich's Avatar
 
Join Date: Oct 2012
Location: SoCal

My Support Groups:
Good to know fortunately I've never had CROHNS in the small intestine
05-02-2015, 05:34 PM   #12
dman9271
 
Join Date: Apr 2015
So it sounds like this could be permanent. That is very depressing. I wish I had known prior to starting the flagyl this could be a side effect. I definitely would have refused it. Has anyone taken the gabapentin for the pain/numbness/tingling? I have been taking percocet at night to sleep but nothing during the day.

For the people that have this, how long did it take for the side effects to subside? It seems as if they are getting worse. Wearing shoes and pants is very difficult. Even the blanket touching me at night gives me so much discomfort.

Thanks for all the responses. I really appreciate the help
05-03-2015, 12:46 AM   #13
Robrich
Senior Member
 
Robrich's Avatar
 
Join Date: Oct 2012
Location: SoCal

My Support Groups:
Dman talk to your doc about amytriptiline. Many cronies use it. It helps with some pain like yours and fibro. It a sleep aid and slows down the intestines.

Last edited by Robrich; 05-04-2015 at 01:01 AM.
05-03-2015, 10:39 AM   #14
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
Percocet is addictive. You should seriously be careful with that stuff, it only takes a few weeks to get hooked. Why not give the gabapentin a try. For comparison, read the warning label on Tylenol.
My neuropathy continued to get worse for a few weeks after I stopped taking Flagyl.
You need to adjust your lifestyle now, to live with the condition. I don't know where you are, but here in Canada we have Shoppers Home Health Care. You may need a cane or a walker so as not to injure yourself. They have a thingy that keeps the blankets off your feet when you sleep. You may want to see an orthopedist. I walk barefoot at home, and wear loose flat bottomed shoes or boots when I go out. I'm thinking of getting a pair of Crocs for the summer. Definitely get off your feet, that was the hardest thing for me to do. I seriously considered getting a motorized wheelchair at one point, but struggled on. It's now so much better. Strange that your EMG was normal.
05-03-2015, 08:55 PM   #15
dman9271
 
Join Date: Apr 2015
Tuff-

When you say some much better, do you mean you are basically back to your preflagyl self? What did you use for pain and sleeping? I don't want to take the percocets at night but I feel like I have no option. If I don't, I would never be be able to sleep. I am a busy attorney and I'm in court almost everyday. I have to stand. I have been taking the gabapentin but it doesn't seem to help. It only makes me feel like a zombie and gives me a headache.
05-04-2015, 07:00 AM   #16
guest19
 
Join Date: Apr 2015

My Support Groups:
DMan - I have neuropathy due to flagyl. I developed numbness in my hands and around my mouth mostly. I have other issues with my back so we are never sure if the leg numbness is flagyl or the back.
I noticed you sounded discouraged that it could be permanent. Mine is mostly gone if that makes you feel any better. I noticed that mine really shows up in combination with a low B12 and when I am worn out physically and nutritionally.
I did not take pain meds as they usually cause other problems for me. A friend used gabapentin for neuropathy post Guillan Barre---all I know is that it was sort of helpful.
05-04-2015, 11:12 PM   #17
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
I'm pretty much back to normal. My neuropathy did not cause any pain, just pins and needles/numbness/sensitivity 24/7. I've just lived with it. Talk to your doctor about pain meds and sleep aids. This could last for a while, unfortunately.
05-07-2015, 10:43 AM   #18
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
Hello. My son is on gabapentin 100 3x a day due to Amplified musculoskeletal pain. Also takes amitriptyline 25 once a day. No big side effects so far but is a low dose. Maybe you can start with a lower dose and see if it works for you?
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
05-07-2015, 07:19 PM   #19
dman9271
 
Join Date: Apr 2015
So I had my appointment this afternoon with a new neurologist. He was very nice, spent over an hour with me. He said that he has had one other patient who developed neuropathy from Flagyl. He said that it took her about 18 months to start feeling better. I almost fainted when I heard that, it seems like forever from now. It has only been a month and I'm going crazy! He said all my blood work and the EMG came back normal. He prescribed a stronger dose of gabapentin for the evening (600 mg) and then Lyrica 1 pill 3 times per day. Also gave me a prescription for Lydicine cream but said it might not help at all. Lastly, he told me to continue to take the oxycondon at night to sleep. I am not too crazy about this but I guess I have no option. I can't sleep without it.

Has anyone tried Lyrica before? Any thoughts?

Thanks
Dan
05-08-2015, 10:08 AM   #20
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
I'm glad you finally got some answers. 18 months is better than permanent. It's an awful thing to go through, do look into shoes and aids to help you. Lyrica is a controlled substance, because some people get euphoria, so I wouldn't take it.
07-08-2017, 05:24 PM   #21
Fighting the Good Fight
 
Join Date: Apr 2017
Location: GARDEN CITY, New York
Hi DMan,
Istarted entyvio 2 years ago. It has helped immensely with the crowns according to my colonoscopy. However i just saw a neurologist who confirmed that i have neuropathy all over body. I used to take cipro and flagyl, as treatment for about 29 years, on and off again as needed, which was often. Not sure if neuropathy is from entyvio, as that is when it started. Or a final farewell side effect from cipro and flagyl as i was on that for four months in a row, on two weeks then off , then on again. Neuro said neuropathy doesn't go away. Once you get it you have it for life. Oh Joy. Now my life is about how to deal with this awful pain. and all the drugs to take for pain are horrible. I've been taking pain meds, trying desperately to find something else or complementary. So far no success, as the meds i have tried have hurt belly or other wierd side effect. Just a word of advice. When i took percocet, it threw me into horrible stomach pain, which was worse than other pain. Everyone is different . So i cant really tell you the percocet does same to you. wish i could help you. I'm trying everything to get rid of the pain. so far no luck. its awful. Sorry you have to deal with it too. Perhaps two people in pain can conquer the pain together. No one really understands the pain. Oh, "but you look good", they say??? Im praying that the dear lord will help. praying your pain is gone???
07-08-2017, 05:30 PM   #22
Fighting the Good Fight
 
Join Date: Apr 2017
Location: GARDEN CITY, New York
also, tried lyrica. Thankfully i told my doc that was having some strange dreams. she told me to stop lyrica immediately. apparently, some people get weird dreams and wake up choking or killing someone!!! Just thought you might want to know. No one tells you this stuff in advance.
Does the gabapentin bother your stomach, make your crohns worse.? Hurt my belly. Having trouble finding another sort of med to help with pain. I tried 4 different ones, all with bad side effects. Wanting to know how your pain is? Thanks Anyone else out there with neuropathy pain after enyvio?
07-08-2017, 05:57 PM   #23
Fighting the Good Fight
 
Join Date: Apr 2017
Location: GARDEN CITY, New York
Hey Dan, wanted to be clear that my doctor told me that once you get neuropathy pain it doesn't go away!! She is the chief of neurology at a hospital in NY! However, I also am diagnosed with fibromyalgia??? So perhaps my pain is worse because of that, so i have been told. Kudos to you for still working. I had to bail. The stress from the pain is too much to bear. But the crohns or side effects from meds or whatever has caused memory problems. Not sure why, yet.I am taking demerol for pain as the percocets and oxyccodons hurt my stomach something awful. I do take xanax xr at night to help with sleep. Someone above said to be careful with pain meds as they are addictive. Well, they can be addictive, but that depends on your personality. What you actually get is a built up tolerance to the pain meds and you will require more. I don't like the term addictive, unless your an addict of other sorts, as it sounds somewhat demeaning to me.Neuropathy Pain has been for two years now.It has not got better. however the numbness and tingling sort of went away. I wish it was the other way around. Rather numb and tingling than pain.
07-08-2017, 09:17 PM   #24
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Fighting the good fight, have you tried Gabapentin? I have neuropathy in my left leg. Gabapentin works for me but everyone is different.
07-09-2017, 03:48 PM   #25
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
I'm on amitryptiline & gabapentin. Has helped my Fibro nerve pains. Also take cocodamol. Tried lyrica but made me feel loopy so stopped it! Hope by now ur feeling a bit better
07-16-2017, 11:19 PM   #26
tots
Senior Member
 
tots's Avatar
 
Join Date: Feb 2012
Location: Austin, Texas

My Support Groups:
I have not had this . Kind of trouble but, check y o it but d levels.

I read enough about in here, talked to my Dr. My level was 18. I do have a spot on my toe that's numb. That's from the low vit D


Hope thus helps,


Lauren

I just reread this- note to self no typing after you take a sleeping pill!

L
07-19-2017, 03:05 PM   #27
Hollaka79
 
Join Date: May 2017
Location: Copthorne, United Kingdom
i just reread this- note to self no typing after you take a sleeping pill!

L
🤣🤣🤣🤣
Reply

Crohn's Disease Forum » General IBD Discussion » Neuropathy from ???
Thread Tools


All times are GMT -5. The time now is 08:52 AM.
Copyright 2006-2017 Crohnsforum.com