Old timer in need of advice

I've seen a number of neuropathy posts over the years on the UC forum. I'd wager it's more of an extra-intestinal manifestation of UC than anything else.

"Although the extraintestinal manifestations of IBD are well documented, the association of IBD with neurologic and neuromuscular involvement is rare and often controversial, with sporadic and conflicting data on its prevalence and spectrum. Neurologic and neuromuscular complications have also been reported, but the real incidence of these complications is unknown, with reports varying from 0.25 to 35.7%"

"More analytically, disorders of the peripheral and central nervous system in association with IBD can be ascribed to at least six different mechanisms, which may be present in isolation or in combination: (i) malabsorption and nutritional, particularly vitamin deficiencies such as B1, B12, D, E, folic acid and nicotinamide deficiencies (ii) metabolic agents, (iii) infections as a complication of immunosuppression, (iv) side effects of medications (metronidazole, sulfasalazine, steroids, cyclosporine A) or iatrogenic complications of surgery, (v) thromboembolism, (vi) immunological abnormalities."

Source: www.sciencedirect.com/science/article/pii/S1873994609001329

Welcome back to the forum. I have been dealing with some neuropathy-like symptoms recently and have seen several doctors, had MRI, bloodwork and physical exams and have not found a cause, though I suspect it is autoimmune related. Tremors, numb extremities/face, painful teeth/genitals. I have done exhaustive internet searches and found the most comprehensive retrospective study regarding neuropathy and IBD below. There seems to be a link between the two but it is not well understood. You'll need to read the whole study but my conclusions from my own research and from the link below are as follows:

Men with IBD are much more likely to suffer from neuropathy than women with IBD.

Give or take, about 30% of all Americans will suffer from neuropathy in their lifetime. Approximately 30% of these people will be diabetic, 30% will have idiopathic neuropathy (no known cause), and about 30% will have some other underlying condition whether autoimmune, alcoholism, injury, malignancy etc.

Interestingly, the authors of the case series below state that immuno-modulators (azathioprene/imuran) are the most effective drugs in dealing with neuropathy in the context of IBD. I can't comment on your specific sutuation, I have no personal experience with immunomodulators. My doctor started me on generic cymbalta, off-label. It has taken the edge off at a low dose but has not been a cure-all. It has also come with several side effects that seem to be getting better as I adjust to the drug. If my condition worsens I will ask for imuran because I cannot afford to be disabled in my line of work. I'm only 37. They are ordering more comprehensive bloodwork for me as we speak. If you find anything out I'd be very interested. Good luck!

See below:

/academic.oup.com/brain/article/128/4/867/284345/Peripheral-neuropathy-in-patients-with

"Conclusions

This study presents the largest case series of PN in IBD. Despite the intrinsic limitations of any retrospective study (referral bias leading to complex epidemiological patterns, unblinded ascertainment of individual response to therapy) and considering that our patients were seen in a tertiary centre after multiple evaluations at different centres, the aid of an extensive, systematic, combined analysis of the literature enabled us to characterize the clinical and electrodiagnostic features of PN in patients with IBD. These clinical syndromes are diverse and most likely secondary to PN ascertainment at different stages of IBD evolution, but certainly include a high percentage of acquired demyelinating PN. In IBD, response to immunotherapy occurred as expected in demyelinating PN, but also in patients with nerve conduction studies and neuropathological findings characteristic of an axonal neuropathy. Therefore, despite the fact that our study is retrospective and not designed to establish causality between IBD and PN, it is likely that there is a primary immune-mediated neuropathy as an extra-intestinal disorder associated with IBD and not merely a co-occurrence with CIDP. Overall, men with IBD may be more susceptible to the development of PN than women. However, women may be more prone to demyelinating neuropathies."

"Do you think the fact my UC has been in remission for over or the levels of Azathioprine could be playing a part?"

The studies I read said neuropathy occurs both during remission and during flares.

I cannot honestly say on the levels of azathioprine being higher than normal, whether that has an affect or not. I'm guessing it is unknown. Studies say aza is used to treat neuropathy pain, so maybe not *shrug* (a guess).

Were you on prednisone extensively over the years as steroids are potentially linked to PN? Sulfasalazine was also cited and it was widely used before the mesalamines, and you've had UC a long time.

How's your bloodwork and blood sugar levels specifically? Any signs of diabetes type i or ii, or pre-diabetic? As Neuropathy has associations with diabetes.

You ask some very good questions of which there may not be answers.

Bloodwork shows low white cells, vitamins normal apart from D. No sign of diabetes. MCH was a little high too I believe. All inflammatory markers, ANA negative. Did test positive as having had glandular fever although I don't recall having had it.

My calf muscles jump and dance all day long. My GP looked terrified first time I visited him. I know what you mean about wife's thinking we are crazy!! I've had so many tests that clearly there is something going on. I think the trouble with neurology is that it needs to be obvious to get a diagnosis and there is much science hasn't discovered yet.

ive tried magnesium, potassium, amino acids, fish oil, glucosamine, vit d and vit b. All without success. Had sports massages etc.

I get a lot of nerve pain/neuropathy plus sacroiliitis. Having a lot of pain in my leg this week. It was worse a few weeks ago. Not sure if it's meds or what.

My father has it bad as well and he does NOT have any autoimmune issues. He takes Neurontin which is a brand of Gabapentin.

Hope you figure something out Charlie and Garth!