New diagnosis:Small Fibre Peripheral Neuropathy
 

I have just come home from a week in hospital and a barrage of tests, I have been diagnosed with Small Fibre Peripheral Neuropathy, I also have crohns disease. The Neurologist is researching if it is linked to the Humira but he seems to think not.... There is a link between crohns and peripheral neuropathies, I had actually discovered this when researching and trying to find out what the heck was wrong. Personally, I think there is a link between the Humira and the neuropathy, everything else that it could possibly link it is ruled out, ie diabetes and b12 and I have had every test known. If it is possible to hit rock bottom .. then i am there. I have been given lyrica for the pain, i can take as much as i want... omg, it is doing my head in.:confused::eek:

I have Small Fiber Neuropathy as well. Hang in there!

Welcome to NeuroTalk:

Here is a helpful site that lists FDA reported side effects.

http://www.drugcite.com/?q=Humira

Click on the "neurological" category to expand it.
Expansions do not have a separate address there, so you
have to click it.

It is a pretty interesting site, but keep in mind not all doctors or patients fill out the report forms. Most do not. So the percentages may not reflect reality.

Vit B12 is not low
 

Hi, Is it still a good idea to up the B12 like in Sticky 2 if your B12 is not low? Mine for some reason is high, I dont get it, I have crohns, but i have been taking for a number of years a low dose of B12 in my Vitamin regimen. I feel so desperate, I have felt the lowest ever and not sure if there is any hope for me, and i am really struggling. After crying on and off for 2 days since diagnosed, my body is on fire when i get into bed, everything is burning, it is so horrible. I dont know how I go back to work, i dont know how my life gets back to normal, i dont know if i have a life anymore.

It would be easier to answer you if you could provide the numbers of your tests.

Since you are out of the US, include the concentration letters so I can convert to US units.

LindaD. I am struggling with SFN as well. But try to hang in there. Hopefully, the Lyrica will start to help with the pain soon and then you can keep searching to find the cause and/or a treatment to help the nerves themselves. I've heard a lot of good things from people on here about Lipoic Acid. Have you tried that yet?

I had a really good period before this latest flare up which has been going on two weeks and has been bad. I try to take things one day at a time. I think others on here can probably, over time, give you some helpful suggestions beyond what I can.

Vit B6 Toxicity
 

Hi, the news is, it is caused by Vitamin B6 toxicity, my level is 150 and it should be in the range of 3-29 or similar to that... So stopped all supplements, not that i was on that much, and now wondering what next. I did read in another forum that it can be caused by (high Vit B6) sluggish adrenal glands, and mine did shut down for a few months about 10 years ago due to toxicity of entocort, or budesinide. So I just have to see if this washes out of me or not, and pray i learn to manage it, the lyrica is definitely helping. I find the cold the hardest thing, I just feel frozen all the time, and then quick as a flash my feet go from freezing to burning. oh what fun !

Have u tried Metanx? It cut my pain in half. I have peripheral neuropathy too. Metanx is a wonder drug for me and non-narcotic. Also, Cymbalta is an antidepressant which helps neuropathy pain.

Good to know about B6 since I am going crazy with vitamins out of trying to solve this. Dr's have been no help to me yet. Any insight from your side of the world?:hug:

The B6 should be used with some caution. Might be a good idea to have blood test.


Gerry)

Metanx--
 

--is merely a prescription vitamin combination, containing methylfolate, methylcobalamin (B12), and the P-5-P form of B6.

All of these can be purchased separately without prescription, so it all depends on what kind of drug insurance one has as to which way would be more cost effective.

There are two points that should be made--first, methylcobalamin is probably better taken/absorbed by itself, apart from any other vitamins/medications, as it is very easy to interfere with the absorption of the large cobalamin molecule.
Second, there is some controversy around the neurological toxicity of B6--there are some reported cases of B6 overdose, but as Mrs. D's B6 thread points out, this is rare and may be due to genetic mutation that blocks the conversion of B6 to its usable form, causing it to build up in the bloodstream; taking the P-5-P, which is readily usable/absorbable (already enzymatically converted) may bypass this difficulty.