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Polyneuropathy secondary to Crohn's questions

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Posted 1/30/2020 7:35 AM (GMT -6)
I was diagnosed with sensorimotor polyneuropathy in June after a nerve conduction study and EMG, I have been diagnosed with Crohn's since 2002. My neurologist believes that the neuropathy is an extraintestinal manifestation of Crohn's and not related to either medication use or nutrient deficiency. I'm currently using gabapentin for symptomatic relief of the neuropathic pain, my neurologist has told me that there is no treatment to help prevent more nerve damage which will occur hopefully only very slowly over time. I'm hoping that there may be others on the board who have also dealt with polyneuropathy that have had success with some treatment and can offer their experience and advice. I have been struggling with the idea that there is nothing I can do to prevent more damage and more pain, I am only just managing to cope with the pain in its current state and I'm sure it will become debilitating if it gets much worse. The neuropathy has caused another disorder called Erythromelalgia which is causing most of my pain presently. Thanks
Posted 1/30/2020 9:14 AM (GMT -6)
I am sorry to read what you have been diagnosed with. I searched back through the archives here at HW & found some older threads. It's a mixed bag to say the least, some said it was drug induced. I did read on various medical websites & they all stated the AI diseases associated was Sjorgens, celiac, RA & Lupus. There may have been a couple of other, but neither crohns or UC was listed. From what I read there is more than one type of polyneuropathy, same with treatment options. What are your symptoms?

What medications are you on for treatment of your crohns? What does your B12 levels look like, as in actual numbers? I think if I were in your shoes, I would consider getting a second opinion with another neurologist. For me it would be peace of mind & another opinion certainly will not hurt anything.
Posted 1/30/2020 2:22 PM (GMT -6)
Hi. I was diagnosed with small fiber sensory neuropathy several years ago. The only thing I was offered was a pain relief med (not gabapentin) that had a high risk of suicidal ideations. I never took it. I, like you, was told there wasn't anything to do other than treat symptoms of pain.
I have found that keeping my magnesium, potassium, and vitamin D in tune have helped some. Actually, reducing stress has helped some too. There are days the pain in my my hands and feet are still excruciating, but I don't want to add a pain med until I cannot live daily for long term without it.
I am also looking into Secondary Amyloidosis as maybe being another reason for the nerve pain - it has many benchmarks that I cannot get explained by doctors - big one is my tongue issues & it has been found to be related to CD. I am trying to figure out IF I have it and IF the treatment would help the nerve issues too.
Until then, I am just taking care of nutrition, hydration and stress containment.
Posted 1/30/2020 3:04 PM (GMT -6)
straydog, thanks for the reply. I have mostly sensory symptoms at present (in my feet/legs, hands/arms and scalp), numbness and tingling, pins and needles, prickling sensations, I also have some muscle weakness in my legs as well. The most distressing symptoms are from the Erythromelalgia which causes my feet, hands, ears and now my face to turn red and actually increases the temperature of these body parts and the pain feels like they are on fire.
I stopped taking Humira to treat my Crohn's about a year and a half ago due to what my rheumatologist believed was a lupus like illness. I have a colonoscopy coming up in April to see if things have changed from the previous scope in April of 2019, there was very minimal disease at that time. My B12 levels have been at or above 400, I've been doing B12 injections since 2013 before I had my resection. I've been discussing starting Stelara with my GI and I suspect that will happen in April after the scope. I had an appointment with him last week and discussed the neuropathy, unfortunately he's never treated another Crohn's patient who had it as an extraintestinal manifestation from Crohn's and he works at large IBD center, so my hope is fading. He did put in referral to see another neurologist in his hospital system so I will be getting a second opinion. I do think that it will give me peace of mind to have another opinion, even if it is the same as the original.
Posted 1/30/2020 3:16 PM (GMT -6)
Habs thanks for the advice about the vitamins and minerals, I will definitely start keeping better control of those. I did start taking alpha lipoic acid at the suggestion of my neurologist, hopefully not in vain. As if Crohn's isn't difficult enough, throw in some nerve pain to see how much you can put up with at one time. I also don't like the idea of taking pain medication, I'm on a relatively low dose of gabapentin which isn't really doing a lot and I'll probably need to increase it at least a little.
I just did a quick search about Secondary Amyloidosis, I don't think the symptoms match what I have going on. I wouldn't be surprised if I have another autoimmune disease that is wreaking havoc throughout my body.
I hope you can figure out if something else is causing your nerve issues, and find a treatment that will help with your symptoms.
Posted 1/31/2020 3:26 PM (GMT -6)
I was diagnosed with peripheral neuropathy in 2004 after having untreated, undiagnosed Crohn's for many years. I had every test looking for a cause and after punch skin biopsies, it was determined I only had 5% of the normal amount of nerves in my feet.The neurologist and my GI agreed that this was caused by my Crohn's, a not so nice extraintestinal manifestation of the disease.

In the beginning the symptoms were so awful, I thought I would lose my mind. Titrated up on Neurontin until I reached, not total relief, but enough that I could somewhat cope. I was also taking Tramadol 3 times a day with the Neurontin. Then when I started on Remicade, and my Crohn's got under better control, the symptoms eased about 25%.

Fast forward and after several biologics over the years, I rarely am symptomatic in my feet and lower legs. I had to learn how to cope without feeling the floor/ground. But I rarely think about it now. I still take 600 mg of Neurontin daily but long ago stopped the Tramadol.

What are you taking to control the Crohn's? My neurologist told me that keeping the Crohn's under control was very important to prevent further nerve destruction.
Posted 1/31/2020 9:30 PM (GMT -6)
Ides, there are definitely times when I think that I will lose my mind as well, your experience gives me a little hope that things may improve. I do think that I probably need to titrate the gabapentin up to alleviate more of the pain from the neuropathy, my goal is to take the lowest possible dose that will allow me to have decent quality of life.

My neurologist also said that keeping Crohn's under control is very important to keep the rate of nerve damage slowed. Unfortunately, I was having other health problems over the last few years and my GI and rheumatologist discontinued my Humira, about a year and a half ago, due to Drug Induced Lupus. I'm having a colonoscopy in April, it's been a year since my last one, and I will probably begin Stelara after the scope.
Posted 2/1/2020 8:40 AM (GMT -6)
Caia, typically drs always start a patient on a low dose of Gabapentin & slowly increase the dosage to a therapeutic level. The side effects should subside with some time. My husband has severe diabetic neuropathy in his hands & feet. He has been on a high dose of Gabapentin for several years. Thankfully the side effects subsided in a couple of weeks.

I would think your gi would not leave you hanging with no meds & a scope not until April. Stelara is getting very good reviews here from members that are on it. It works completely different than Humira, no comparison.

Take care.
Posted 2/4/2020 4:45 PM (GMT -6)
I have been taking Stelera for 2.5 years. It is the BEST of all that I have taken (Remicade, Humira, and Simponi). I took Simponi for 9 years after developing drug-induced lupus from humira also.

I began Stelera at every eight weeks, but they have shortened the interval to every 6 weeks. This was because of my ankylosing spondylitis. My GI had to do the order and then convince the insurance it was helping be helping my Crohn's.I can move to every 4 weeks if necessary but right now, I'm all good.

Good luck and get one something even if the scope is good. Crohn's does silent damage even when the guts seem calm.
Posted 2/10/2020 10:04 AM (GMT -6)
Ides...just saw your notes on keeping the CD in control...I really think that might be why my nerve symptoms have eased too. Although I am not taking any major CD meds, my symptoms are much more in control than the 5 worst nerve symptom years. You do make me consider bigger meds though....I am still waffling on daily life versus am I causing future damage not moving there....you help me think of the future more.
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