unusual neurological symptoms and UC connection?

Hi Everyone,

I believe I am mostly in remission (1 BM per day; no blood) on Apriso and intermittent rowasa. A few months back, I developed very severe neurological symptoms and i'm trying to figure out what the cause is, and whether there is a link with UC and/or meds. I did read that many people with IBD have neurological symptoms. Mine have been very severe so I don't feel like I can let them go and do need to figure out what is going on.

My main symptoms are widespread numbness in the body (bilateral), intense cold sensations (feet, hands, face suddenly feel like they are freezing), chills and tingling. I feel like i'm fighting some infection with the chills but no infection on blood work or fever. The symptoms are pretty disabling at this time. All blood work and MRI is normal, including ESR/CRP, CBC, metabolic function, glucose, thyroid, b12, lyme test was normal. I am still slowly doing more tests.

When it started, I was on balsalazide so I switched to Apriso a few weeks back and it is not better. I was worried it was from the UC meds, but don't have other options aside from mesalamine formulations.

Any ideas or thoughts? Anyone else with bizarre symptoms?

P.S. You posted about a month ago that your doctor + CVS told you that Colazal was no longer in production. FYI, I was able to get an Rx refill last week though my insurer does require me to process for home delivery by a shipper rather than to use a local commercial pharmacy. At 1st the shipper e-mailed that they would have to review my re-order with my doctor's office before they could send the med. SO-- it could be that your insurer won't cover brandname. That has happened to others on this forum and my insurer gives me problems, too, about it, but they can't tell me that brandname went out of production because my MD has long experience with clinical trials for IBD treatment and therefore monitors drug production & marketing issues. / Old Hat

Flagyl (metronidazole) can cause peripheral neuropathy with extended use. Raynaud's syndrome is another possibility for numbness in extremities. As I recall, Deltaforce has posted here in the past about Raynaud's; I think he wrote about it causing him problems in cold weather, especially. An aunt of mine with Crohn's also had Raynaud's-- so that may be something to question your doctors about. RE chills: I can get them from seasonal allergies, rather annoying. The fact that you're more bothered by them lately probably is an auto-immune/allergy combo problem. Have you tested for vitamin/mineral deficiencies? Be sure your vit D level is 30 or above. / Old Hat

It's good that finally you're getting some answers RE your symptoms. 15 vials of blood, though, whew! You have a right to feel tired of it all. / Old Hat

FYI, the Mayo Clinic online seems to be hosting a patient "conversation" about small fiber neuropathy, in case you want to take a look. / Old Hat

Hi everyone, I am new to this forum and this is my first time posting. So nice to have a place to share info and support. I have had UC for 9 years and had been in remission for 6 years using Xeljanz. I am currently flaring since last colonoscopy. Colonoscopy looked good, and my GI has no idea why I started to flare, but I am not surprised due to the events of the past 5 months. I had cervical fusion in August which unfortunately left me still compressed and in need of more surgery. But I also developed neuropathy a month after surgery which looking back, I probably started with prior to surgery. I too am wondering if my UC or meds have caused this neuropathy. I am curious how they diagnosed you with SFN. Sounds like your medical team is right on top of this. I had EMG which was negative, bloodwork negative, and my neurologist said possibly from years of B12 being low normal but doesnt know for sure, but doesn’t seem to want to do any more extensive testing. I am so interested to see if your specialists see a clear relation to your history of UC and/or meds.

Neuropathy commons is an excellent website for reading about neuropathy and tests to rule out autoimmune issues that cause neuropathy. https://neuropathycommons.org/

LMWh20, great that you are getting a new referral. Isn't it fun to deal with UC and a bunch of bizzare neurological symptoms that make you think you are going nuts? Let them know that it's progressive. Your symptoms sound like they could be more in line with SFN because you don't have motor or balance issues, and a wide range of symptoms and burning feet are commonly seen with SFN. Basically, if you get the SFN diagnosis, then they can run a bunch of autoimmune tests, other blood work as well as a test for toxic metal exposure (arsenic, mercury etc). If all those are negative, then it's harder to identify a source, and UC or meds would be possibilities.

1) what meds are you on right now? Check to see if any of them have neuropathy as a side effect.

2) Did you take antibiotics before the neurological symptoms began since you had surgery? Many antibiotics trigger peripheral neuropathy and other neurological issues. Cipro and flagyl are worst offenders, but there are more. Sometimes they are reversible and sometimes permanent. My problems began 2 days after taking an antibiotic for UTI for just 5 days. I've been off the antibiotic for 3.5 months and am still having more issues, so who knows it this could be part of the etiology.

Keep me posted on what you learn.

Post Edited (Jane974) : 12/19/2020 9:25:13 PM (GMT-7)

Hi uniform charlie,

Thanks for your response. I am like you that mesalamine meds seem to increase it at minimum, impossible to tell if it's the root cause. Have your symptoms progressed over the years? With nerve damage there is often progression and cymbalta only covers over the symptoms. That's why i'm trying to get a thorough workup so that this can be reversed or addressed. It can be reversed if there is a cause for it or it's autoimmune issue.

From the research i've done, IBD folks are more likely to have nerve damage compared to general population. Etiology is not always clear. Many of them have small fiber neuropathy issues, and some have demylenating neuropathies.

Fibromyalgia is a diagnosis they give you when they can't figure anything out. I would personally request a skin biopsy to check for small fiber neuropathy so you can get access to treatment or resources in case it gets worse overtime. There are some treatments that are showing promise, like IVIG. Corticosteroids can also help, if it's an immune mediated cause.

Uniform Charlie said...
I can't say whether it has progressed over time because of ebbs and flows. My neurologist said that further testing would not yield any results and I believe him.

I think if your symptoms aren't progressing and you aren't in pain then you probably don't have to do much about it. Depends on your comfort level. The first neurologist told me that "there is no point to further testing because i'm confident everything would be normal and we would just waste your time and money." I don't trust physicians who tell me that there is no point to further testing and that my tests will be normal before doing them. Anyhow, I never went back to that neurologist and the next one did one nerve test, which showed abnormalities and gave me a real diagnosis. The useful part of the diagnosis is that you may be able to find a root cause, as they will run more tests to see what is causing the neuropathy. 50% of people usually find a cause and 50% don't, but 50% is high odds. The good news is that if it's due to glucose intolerance, thyroid, toxins in medications/toxin exposure, vitamin deficiency or autoimmune neuropathy, they can actually treat it and reverse it.

LM, here is a study on IBD and peripheral neuropathy. I would show this to the neurologist since IBD patients have particular types of PN and treatments with immunotherapy (IVIG, steroids) are actually helpful. Most neurologists don't have patients with IBD.

https://academic.oup.com/brain/article/128/4/867/284345?login=true

Many of the UC patients with PN have demyelanating neuropathies. Interesting, most of the sample responded to immunotherapy like IVIG so that is hopeful! Don't let them just prescribe gabapentin or cymbalta because those meds don't treat nerve damage and just cover it over. That is not a treatment plan in my opinion.

Post Edited (Jane974) : 12/23/2020 11:30:25 AM (GMT-7)

Jane974 said...

Uniform Charlie said...
I can't say whether it has progressed over time because of ebbs and flows. My neurologist said that further testing would not yield any results and I believe him.

I think if your symptoms aren't progressing and you aren't in pain then you probably don't have to do much about it. Depends on your comfort level. The first neurologist told me that "there is no point to further testing because i'm confident everything would be normal and we would just waste your time and money." I don't trust physicians who tell me that there is no point to further testing and that my tests will be normal before doing them. Anyhow, I never went back to that neurologist and the next one did one nerve test, which showed abnormalities and gave me a real diagnosis. The useful part of the diagnosis is that you may be able to find a root cause, as they will run more tests to see what is causing the neuropathy. 50% of people usually find a cause and 50% don't, but 50% is high odds. The good news is that if it's due to glucose intolerance, thyroid, toxins in medications/toxin exposure, vitamin deficiency or autoimmune neuropathy, they can actually treat it and reverse it.

__-----------------------------------
Thanks that is interesting regarding reversal. To be honest I had assumed it was the mesalamine for a while so just figured there was nothing I could do since that's really the only approved med for mild/moderate UC.

Post Edited (Uniform Charlie) : 12/24/2020 11:26:08 AM (GMT-7)

Hi Jane, thanks for the link to the article. Very interesting information and gives me hope. My UC flare seems to be improving and am off the budesonide. My GI now wants to have me stop the Xeljanz to see if that is the cause of the neuropathy. I want to see neurology at Mass General first before I do anything. Stopping the Xeljanz may very well put me back into flare, which will hold up cervical cord decompression surgery. On the other hand, waiting to stop Xeljanz until post surgery means it could be months before I am able to stop the Xeljanz. I am between a rock and a hard place at the moment. So thinking best to see neurology asap to possible get some more direction on this. Ugh. Have you found out any new information from your bloodwork? Keep me posted please. Thanks again fir the info. You have surely done your research.