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Neuropathic pain #281499
09/25/18 03:03 PM
09/25/18 03:03 PM
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Iowa City, IA USA
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DadCue Offline OP
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This doesn't seem to be that much of an issue but may be of some interest:

Neuropathic pain

IMHO this is more associated with inflammation and perhaps unrelated autoimmune conditions and other diseases.



Re: Neuropathic pain [Re: DadCue] #281504
09/26/18 12:46 PM
09/26/18 12:46 PM
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Toledo, OH
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MichaelSean Offline
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It's interesting you bring this up. When trying to get to the root of my stomach problems, after a colonoscopy and upper endoscopy both came back negative, my gastroenterologist told me that he thinks my issue is neuropathic pain. It certainly would explain a lot about what's been going on with me. And it makes a certain amount of sense considering that my spine, as it compresses, is pinching nerves. I've recently started taking a 25mg dose of Amitriptylene at night. So far it seems to be working. I have my appetite back and I'm sleeping better than I have in a long time.

The only side effects, so far, are dry mouth and a little morning grogginess. I was woken up by my alarm clock for the first time this AM in I can't even remember when. So I'll take a little AM grogginess over waking up at 3 AM and tossing and turning until morning.

Last edited by MichaelSean; 09/26/18 01:57 PM.
Re: Neuropathic pain [Re: DadCue] #281507
09/26/18 03:34 PM
09/26/18 03:34 PM
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MartinMMM Offline
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Also started taking nortriptyline at the recommendation of my gastroenterologist for severe IBS. It's only been a few days and already feeling much better. Two years ago results of nerve conduction tests showed neuropathy in both arms from shoulder on down. That got better with resumption of humira after trying some other biologics. They also told me to stop mowing and line trimming our 5 acres of lawn because of the vibrations. A benefit?

Regarding the nortriptyline the idea is to "remap" the nervous system. It could be this is also a factor in how much and what kind of pain one feels from A.S. and related diseases. I've had success using the Quell device which essentially cuts my pain from 75 - 90% depending on environmental factors. So it won't surprise me if nortriptyline also helps. As a side note, I've sometimes felt well enough with these various treatments that I wonder if I have a disease at all. So I stop using the quell and sure enough with a day a lot of the pain returns.

Excerpt from NIH article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669938/
"Visceral hypersensitivity and dysregulation of central pain perception in the brain-gut axis is considered to play a pivotal role in the pathophysiology of IBS. IBS patients have a lower sensory threshold to colonic and rectal balloon distention and electrical stimulation[23]; therefore, beneficial effects of antidepressants can be explained by partial increment in central pain threshold. Other mechanisms by which antidepressants might express their effect include anticholinergic effects, regulation of GI transit and peripheral antineuropathic effects[24,25]. The results from the current meta-analysis show that TCAs induce clinical response and reduce abdominal pain score in patients with IBS."

Re: Neuropathic pain [Re: DadCue] #281542
09/29/18 04:47 PM
09/29/18 04:47 PM
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I think a lot of my current pain is neuropathic, and I feel better with gabapentin and the Quell MartinMMM suggested. I started on Remicade in March 2018 and all my inflammatory markers are back to normal, but my pain is not where I want it to be. I can't go up much higher on my gabapentin because of side effects. I also take celebrex, use Voltaren gel, and take tylenol as needed.

The question that my rheum and pain MD cannot seem to answer is "How much of my pain is still inflammatory and how much is AS?"

I also have Crohn's, and a recent colonoscopy showed active disease in my ileum. My left thumb joint is visibly swollen and quite painful. I want to bump up my Remicade dose (I'm on 7.5mg/kg every 4 weeks) but they keep telling me to wait another month.

I'm discouraged that this is now my life. I saw a thread on here about mourning the loss of the life you expected, and I continue to struggle with that.


HLA B27+, AS, Crohn's, type 1 diabetes
Re: Neuropathic pain [Re: DadCue] #281565
10/01/18 01:06 PM
10/01/18 01:06 PM
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MichaelSean Offline
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I'm not really sure what the differences are between amitriptilyne and nortiriptilyne. But I can say, having been on the amitriptyline for more than a week now, it's working. I still have slight tinnitus in my left ear but it's at a tolerable level now. My occpitial nueralgia (left side head pain) is gone. My stomach doesn't hurt anymore and I can eat again. And I can sleep through the night again. Between that and the Humira, I'm as back to my old self as I've been in a long time.

I'll never be the man I once was but I'm not so far off from that now that it depresses me like it used to. I feel ... pretty damn close to normal. And that's nice.

Last edited by MichaelSean; 10/01/18 01:07 PM.
Re: Neuropathic pain [Re: DadCue] #281567
10/01/18 02:18 PM
10/01/18 02:18 PM
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kglenn Online
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MichaelSean--so glad that you have found something to help with all your issues!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Neuropathic pain [Re: kglenn] #281569
10/01/18 05:16 PM
10/01/18 05:16 PM
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MichaelSean Offline
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Originally Posted by kglenn
MichaelSean--so glad that you have found something to help with all your issues!


Thanks! I'm just grateful for my gastroenterologist. I've been seeing various doctors for a year and a half. He's the first one who seemed to actually figure out what was wrong with me and how to address it.

Re: Neuropathic pain [Re: MichaelSean] #281579
10/02/18 12:15 PM
10/02/18 12:15 PM
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DadCue Offline OP
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Originally Posted by MichaelSean
I'm not really sure what the differences are between amitriptilyne and nortiriptilyne.


They are basically the same. Generally when drug names have the same ending there are only slight differences. Drugs.com will give you a more detailed comparison.

Nice to hear that amitriptyline (your y and i are in the wrong places) is working for you! Just kidding about the spelling -- drug names are notoriously difficult to spell and pronounce. Then when there are brand names and generic names it becomes hopeless.



Re: Neuropathic pain [Re: DadCue] #281688
10/09/18 03:56 PM
10/09/18 03:56 PM
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MartinMMM Offline
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Another interesting pdf from Johns Hopkins about Nortriptyline and pain control: https://www.hopkinsmedicine.org/neu...erve/patient_info/NORTRIPTYLINE_2007.pdf

FYI I started taking it at bedtime but had some agitation, sleeplessness and anxiety in the middle of the night. A paradoxical effect. Now I take it in the morning and do very well as long as I minimize caffeine intake. None of the drowsiness they mention as a side effect.

I've read that the difference between amitriptyline and nortriptyline is in side effects. Nortriptyline is apparently less likely to cause sexual dysfunction.

Re: Neuropathic pain [Re: DadCue] #281689
10/09/18 04:58 PM
10/09/18 04:58 PM
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MichaelSean Offline
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It's interesting that they list dry mouth as a side effect in almost everyone who takes more than 75mg of the Nortriptyline. I'm taking 25mg of the Ami and have had really dry mouth since I started. Annoyingly dry because it leaves a foul taste in my mouth.


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