seeking opinions
 

I was diagnosed in 2011 with small fiber neuropathy, although I have had it now at least going back to summer of 2010. The current diagnosis is idiopathic. I think if if my neuro had to hazard a guess right now his most likely one would be something of an autoimmune cause, but there's no "smoking gun" there. Also, I had a history of either high normal or pre-diabetic fastings. My latest A1C btw was 5.3. I drank too much for many years. But I have been alcohol free for over a year now and a skin biopsy I had in Nov. 2012 actually showed the sfn was worse than it was a year ago. So I think my neuro now thinks it is less likely related to alchohol.

With regards to the autoimmune consideration, I have had the following red flags: a consistently moderately positive ANA, small pleural and pericardial effusions that were detected by accident in spring of 2012 and which I'm pretty certain can be caused by autoimmune disorders such as lupus, my capillaries under my pinky are "splintered" or something like that which my rheumatologist says are sometimes seen with people with autoimmue conditions, and bouts of unusual/don't make sense fatigue. There were one or two other suspicious things, but the ones I named are the main ones that I remember. My current diagnosis from the rheumy is I believe undifferentiated connective tissue disorder.

At any rate ,here is kind of where I stand. I was taking gabapentin but it does not seem to help me much so I've recently had Lyrica called in for me by my neuro and I'm probably about to give it a try. My rheumatologist and neurologist have talked and they think that it is worth it to try me on plaquenil. This under the theory that if I do have an autoimmune disorder that is causing the SFN, that the plaquenil might help with autoimmune situation which in turn might help with the SFN. Might. But they think it is worth trying.

I have been taking 600 mg of alpha lipoic a day for about a month and a half and for while thought it MIGHT be helping. But the last couple of days have been rather hellish with a major flare up. I don't know why it is but sometimes I can go a couple of weeks or more with few problems, and then it's like someone hits a switch and hits it hard.

I'm thinking about adding in either benfiotiamine or methyl b-12, or both. I have had both b12 and b1 checked in the past. B12 was a little over 500. B1was normal, but I can't remember the exact number.

So here's what I'm thinking about adding in summation...Lyrica for the pain, Plaquenil to try and help the possible autoimmune connection and Benfiotiamine and/or methyl b12.

Any thoughts on any of this would sure be appreciated. I'm sure there is something I left out but this is all I could think of. Not been a good day.

Thanks so much in advance!

Hi, I can't help much but to add Benfotiamine has been a life saver for me. It really helps with the burn and I wont go a day without it.

Also, I take B12 daily even though my test was 4,000 (I did not stop taking supplement before testing) I would suggest you take B12 also, as your number is not high.

Also I would suggest magnesium. I take it and I also bath in epsom salt, which is magnesium, as it goes into the blood stream fast when I take a bath and really helps.

Good luck, Im sure others will come along with more advice.

Oh, and I think it is very normal to have ups and downs. I can go days doing great then have a few days where nothing I do helps. It's just part of the game. :(

I have to wonder about that "lupus" symptom...

What drugs do you take for other things?

Drug induced lupus is a problem, and often missed by both patients and their doctors. Even some common blood pressure drugs can cause it.

http://www.ncbi.nlm.nih.gov/pubmed/11780682
Please read this link.

You can search "drug induced lupus" in Google and find more
articles.

I had a drug induced arthritis in both knees during my pregnancy from one of the drugs mentioned in this article:
hydralazine.

mrsD,

Here is a list of the other medications that I'm taking:

1. Niaspan 1500mg a day- Been on this for a few years. Always wondered a little about this because my first tingling/burning in feet began a few months after starting Niaspan. It then went away for almost a year before it came back. Chalked it up as a coincidence as I just couldn't read much to indicate that Niaspan could cause neuropathy. Flushing yes, but didn't see much in the way of it and periphral neuropathy, like say statins. Also, because like I said the first burning/tingling in feet went away for a long period before returning and over that time I was taking the Niaspan every day

2. Alfuzosin - 5 mg a day for bp.

3. Domperidone - 10 mg 2x a day for occasional delayed gastric emptying (probably caused by the small fiber neuropathy)

4. Uroxatral - one pill a night for bladder issues caused by the small fiber neuropathy.

Also, I used to take a statin, but quit about 2 years ago because I was afraid it might be the culprit with the neuropathy. Obviously, this wasn't the answer.

Took nexium for many months before the neuropathy started up and then many months afterwards. I stopped with all acid reflux medications about a year ago. Again, to see if it would help with the small fiber neuropathy.

One other thing I wanted to note regarding my bladder issues. When my burning feet start to flare up I almost always have issues with my bladder going haywire -- urge to go, difficulty starting when I try, difficulty emptying.
It's pretty amazing to me how much the two go hand in hand...if my feet are not burning, by bladder is behaving; feet start to act up, so does the bladder.

Finally, one other thing regarding my sfn "flare ups". More and more I think stress might be a player in kick starting my small fiber flares. Can't say that with certainty but that's been my observation.


Thanks.

Alfuzosin is the same as Uroxatral..

You posted this twice.
http://en.wikipedia.org/wiki/Alfuzosin

Dromperidone appears with an interaction with
Alfuzosin here:
http://www.drugs.com/cons/domperidone.html

When do you have your better times? When do you take your medicines? Are the better times when you are wearing off one or both of these? Do you have flares with activity?
I think you should keep a log of good times and bad...see if there is a trigger there.

Have you reported this to your doctor?
Have you had regular liver tests while using Niaspan?
Over time niacin can become toxic to the liver.

Ooops. I sure did. #2 should have said Amlodipine. That's what I take for blood pressure.

My better times seem to be when I'm under less stress. Also, sometimes when I lay down to go to bed things (the burning/tingling) seem to calm down a little bit.

Thanks for the info. on domperidone and alfuzosin as well as the heads up about the Niaspan.

Like I say, I generally associate these flare-ups with stress more than anything.

I guess I'm in the same boat as so many others...know I have small fiber neuropathy. Been confirmed through two different skin biopsies. Just don't know what's causing it or what to do about it. Frustrating!

This is the drug checker link with amlodipine + Uroxatral:

http://www.drugs.com/interactions-ch...=172-78,119-47

Notice the grapefruit juice warning...
Also the Uroxatral needs to be taken with food.

Dromperidone is not on their checker because it is not
approved for use in US. You must be getting this in a special way? from a compounding pharmacy or Canada?

Amlodipine also shows up on the dromperidone list.
You should print this all out and take it to your doctor.
Medications can really do a number on you when in conflict.
You can also get an allergic reaction to some any time.

Thanks so much, mrsD.

Does the fact that I can have several good days/weeks at a time and then all of a sudden have a major flare up of the sfn, often it seems coinciding with more stress, mean anything to you as far as maybe pointing more towards something of an autoimmune disorder? Maybe my immune system goes bonkers when under stress??? I'm just grasping, but wondering what you might think.

Having good days, is a good sign. Having no good times is a bad sign.

It means your trigger is not constant.. If you have spinal compressions, then over activity may trigger you.

Something in your environment. That is why keeping a log is a good idea...it might pinpoint something you hadn't thought of.

Big stress actually depresses the immune system. People under a sudden stressor can get flu, infections, pneumonia, etc when if the stress hadn't happened, they would not. There is a link to infectious illness and the hypothalamus...
more here:
http://en.wikipedia.org/wiki/Psychoneuroimmunology

We just had a medical emergency with our young 2 yr old cat this summer, and the Vet on vacation explained all this and how CATS have acute illness following stressors! So it is not just us! She had a run in with a mink we think, had an invisible bite on her back neck area (mink have short teeth), and went into a lethargic coma state over the first weekend we were up there. She almost died! Hence the Vet lecture! After almost a week the bite festered up and then the treatments were more clear and she did recover. But it was very dicey for 3 days or so. I had to give fluids by syringe orally every 10minutes! She had a really high fever too. So it might be a mammal thing...stress, depressed immune response, illness and perhaps worse for some.