Does anyone take B6 for neuropathy/nerves?

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cured4real?
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Date Joined Dec 2005
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   Posted 11/13/2008 11:45 AM (GMT -7)   
For those of us with neuropathy, I found it really strange that for many years, B6 has been prescribed with Isoniazid (INH) an old TB med/antibiotic to protect the patient from the nerve damage that the drug causes. I believe they give it in some doseage to every person taking INH, though I'm not sure.
 
Since I have diabetes and endocrine problems, my risk is really high so they prescribed 50mg of B6.
 
The neuropathy and nerve problems, including brain, on this drug have been severe for me because of my bad liver and other problems. I couldnt type for long spells, really numb and mental issues like panic and short term memory problems.
 
I recently got 100mgs since I couldn't get 50s and a lot of it went away.
 
Now, I wonder if they know so well that B6 works (and it clearly clearly does from my experience--could not go without it), why don't they try it on us plain neuropathy patients instead of harder meds like lyrica, neurontin and the rest. My RLS is so much better and I'm much more normal taking it.
 
The B6 bottle says it protects the nervous system. Now I know the FDA doesn't approve that stuff but it is standard protocol for anyone taking INH so there must be some real medical evidence and merit for taking it. I know from experience that even after I quit taking INH I will continue on the B6 100mg. It seems such a harmless thing I can do to protect my nervous system, it makes me mad it wasn't offered before.
 
Has anyone had B6 recommended to prevent nerve damage? Some say B12, but that has not workedfor me and gives me bad side effects, but the B6 works with no side effects.
 
Just wondered and thought this mght be helpful and something to discuss with docs since it makes such a dramatic positive effect, stronger than any prescription nerve med I've taken.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
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Date Joined May 2005
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   Posted 11/13/2008 12:21 PM (GMT -7)   
I was told B-12 5000 MCG daily by my old rheumy. The brand I buy is a small chewy cherry flavored tablet - I haven't had side effects.

Good suggestion for folks with the "tingles"!

Lynnwood, Co-Moderator: Lupus Forum
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Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 11/13/2008 4:47 PM (GMT -7)   
Marji said...
I know from experience that even after I quit taking INH I will continue on the B6 100mg. It seems such a harmless thing I can do to protect my nervous system
A word of caution - when you finish your INH regime, I would suggest asking your doctor to test your B6 level. Vitamin B6 can cause problems if a person has too much in their system. B6 toxicity can cause neuropathy and other nerve disturbances. My B6 and B 12 levels were tested during the search for a cause of my peripheral neuropathy. My B6 was a little high and I was told to not take any supplements and watch foods supplemented with B6. In addition my B12 was low and now I take 1000mcg sublingually every day.

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 11/13/2008 7:38 PM (GMT -7)   
Lynnwood, I used to take the sublingual when I was younger, but now my B12 is always High! Crazy. So when I take anything with lots of b12 I get headaches and feel awful.

Ides, thanks for the heads up. Heaven forbid my docs bother to test my B6 level. Mayo had to tell my internal medicine doc to test my liver! Now Iwill mention it to her.

My B6 must be really low because I was looking at having to stop taking the INH until I upped to 100mg from 50. 50mg didn't help much.

I'm having some mental hyperness, like a panic attack alot, but my thyroid hormone needs adjustment (I go next week), so I can't judge. Maybe I can get her to test the B6. I didn't think it wasa big deal since it's a water soluable vitamin. I used to take those stress packs with huge amounts of all the B vitamins when I was young and healthy, much higher doses of both. I always thought they were safe. Good to know, especially with a bad liver.

Thanks you guys!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Alleg
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/22/2008 8:00 AM (GMT -7)   
Hi Marji,
 
It was so interesting to read about your experience with B6.
Completely by accident my husband and I recently had a similar unexpected experience - but in our case it was after taking P5P which is a safer way to take B6.
 
It seems there are risks if one takes a lot of B6 for a long time - but not with P5P.
 
If you do some googling you will find the info.
 
Thanks a lot for sharing:)))
 
Yannic

cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 11/22/2008 7:24 PM (GMT -7)   
Hi -
Thanks so much Yannic and Ides for the heads up. I will research that for the future. Right now though I'm "prescribed" B6 for the next four to five months, which is fine. I just find it interesting that I need twice the normal "high" amount, and that I'm have less neuropathy now on a nerve damaging medicine (isoniazid), and its all because of the B6. My B12 is abnormally high, though there is no nutritional reason for it to be so, in fact it should be low. Docs are just beginning to look at abnormally high B12 as being an anomaly in some medical conditions, but more just an oddity and generaly considered harmless. Possibly, my metabolic disorder extends to b vitamin metabolism in general.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 11/22/2008 8:33 PM (GMT -7)   
Hi Marji, I take b12 under my tongue every day. I read an article that said for some reason even without being sick as we get older our body does not absorb vitamin b as well as it should. My son told meI should take all the b vitamins.3 6 9 12 or whatever. but I have trouble finding the 12. I'm glad somthing is helping you though that doesn't seem to be hurting you in anyway. I agree with with the others though. I think of things like not taking my pottasium with my lasix. that can kill ya. I just don't think of things like that. I think what the heck it's a vitamin. But I'm lrarning. Let us know what you doc has to say I am curious. Og the reason my dr. put me on b12 was because I'm always batteling anemia. Do you have that?
love ya

carol
Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/22/2008 10:00 PM (GMT -7)   
No, I have too many red cells and my pct white cell is high normal while the absolute count of white cells is high--now whatever that means. My platelets are low, of course.

My liver is so messed up even the hepatologist at Mayo says he has no idea what it can handle and what it can't. I could be fine or go into liver failure, depends on what part of the liver it hits and what it is. Its sort of like playing the slots or the game with the colored chips that fall down through the plastic maze like thingy.

Like lasix. I started going deaf on and off in the first week and added potassium makes me kooky, though my potassium is often a little low. I guess just a little potassium packs a big punch and I don't supplement with any vitamins my doc doesn't say to take and they only order just what I need, can't take a multi, no iron, etc. etc. the list is long.

The B6 is a medical requirement, the first hard and fast medical requirement for a vitamin I've ever had. Ever think those docs are holding out on us? ;)

I was told to take E as a requirment for my liver, but liver said "no" and it made me jaundiced. I can take A though, but that doesn't help the problem. A research article stated that vit a was effective against cancer caused by a list of agents. Though too much is fatal.

Vitamin D is another that there are two sides of the coin on, since it is an immunosuppressant and hormone type substance, the idea being that if there is a disease agent responsible for autoimmunity, then vitamin D "overdose" as children or adults may have caused problems with the immune system while allowing the agent to fester, even though I feel much better eating foods like mushrooms and milk rich in vit D because of the immunosuppression (my vit D is normal). Course I feel better on steroids too...
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


DC1946
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/7/2009 2:19 AM (GMT -7)   

B vitamins

I have recently started taker

One A Day vitamins for Women

 

They have all the B vitamins that I have been told help the neuropathy and poain from it.

Hopefully it will help as I more or less have constant pain in my feet.


DC1946


Alleg
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 5/7/2009 4:08 AM (GMT -7)   

Hi,

You might consider that you have a gluten intolerance/sensitivity. In my case gluten was the culprit and when I cut it out most of my neuropathy disappeared. You might give it a try - even if you don't have any of the typical symptoms (diarrhea, constipation, bloating...). If you do some googling you will find some very unexpected symptoms caused by gluten.

For any chronic condition or health problem that MDs can't explain or heal consider the Mind-Body connection. Google: John Sarno, TMS, Why zebras don't get ulcers, Marc Sopher MD...

Best of luck,

Yannic


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/7/2009 12:50 PM (GMT -7)   

In my case, I got tested with a really high end high sensitivity test for gluten/celiac and don't have it.  I do have metabolic syndrome and glycogen storage disease marked by hyperinsulinemia and severe steatohepatitis, which is finally beginning to be investigated and taken seriously due to links with liver cancer and other diseases.  Metabolic problems can be very serious. In my case, due in part to heredity, my liver does not metabolize glucose or carbs properly and does not burn fat well. Eating a low fat diet causes me to store more fat since that is the body's response to fat starvation.  I must eat a moderate to high fat diet, almost like the ketogenic diet, in order to lose weight, and must avoid as much carbs and sugars of all kinds as I can. Many diabetics have the same problem, where it is the liver, not the pancreas, causing issues.  Eventually, the increased demand for insulin will send me into type two diabetes full-blown because the pancreas will just burn out. I take metformin, which helps the liver to deal with sugars better and follow a special diet.

Diabetics are beginning to take issue with the national diabetes foundation's recommendation of a "heart healthy" diet, as it contains lots of carbs and little fat, which causes those of us with fatty liver, once called "diabetic liver", to get much worse.  I was on a very low and low fat diet for many years after the onset of my fatty liver as they thought it was a good thing, and even put on the drug now called Alli, all of which caused significant worsening of my liver disease to the point that I'm one step from end stage liver disease. I have stopped the progression of my liver disease through Metformin given to me by my hepatologist, and an Atkins type diet with moderate fat intake and significant protein, etc.

So one diet might be okay for one, and very detrimental to another.


Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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