[jurgen975]

Mrs.D,

This question is directly for you.My neuro believes i have a polyneuropthie from using dapsone.
Everything i can find on the net about a dapsone indused neuropathie indicates that is temporary and that it is motor neuropathie or motor-sensor neuropathie.
I cant find anything about a pure sensor neuropathie that is as long lasting as i have it 1.5 years now.Maybe you can help me out with some more information about this dapsone neuropthie

Sheers

[mrsD]

Have you seen this article?

http://www.ncbi.nlm.nih.gov/pmc/arti...1/?tool=pubmed

It is pretty detailed.

[jurgen975]

Originally Posted by mrsD

Have you seen this article?

http://www.ncbi.nlm.nih.gov/pmc/arti...1/?tool=pubmed

It is pretty detailed.

No i haven't,interesting the article says it should resolve in some causes after 3 or maybe x years when a patient stopped the oral dose.
I stopped with that around summer 2008

[mrsD]

I will look up the metabolism of this drug for you. I can't tonight but I will tomorrow.

If I find a hint, to point us in a supplement direction to help you I'll post it here on this thread.

There may be something you can do to speed your recovery.

[jurgen975]

Originally Posted by mrsD

I will look up the metabolism of this drug for you. I can't tonight but I will tomorrow.

If I find a hint, to point us in a supplement direction to help you I'll post it here on this thread.

There may be something you can do to speed your recovery.

Hope so thanks anyway for the help

[mrsD]

One thing that dapsone causes in the body is a form of anemia, called methemoglobinemia:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1368303/

http://emedicine.medscape.com/article/815613-overview

This changes the heme in blood to Fe+++ which then cannot carry oxygen to tissues. This may be a main cause of the neuropathy... a lack of oxygenated blood.

This link states that some agents used have no "proven" value, but I think they may be worth a try:
http://emedicine.medscape.com/article/815613-treatment

Investigational agents and therapies have no proven benefitsin the treatment of methemoglobinemia (eg, vitamin C, an antioxidant, and N- acetylcysteine, a cellular antioxidant)

If you no longer take this drug, using the treatment protocols probably are not going to help. (methylene blue, and cimetidine). What I gather is that you no longer take dapsone.

I would do the supplements used to repair myelin:
Omega-3 fatty acids
B6, folate and B12
Using 500mg of Vit C a day can't hurt.
And I'd try the acetyl carnitine + lipoic acid, that support the mitochondria where energy is created in the cells.

The NAC which is n-acetyl cysteine is optional, and is mostly for liver metabolism. If you no longer use the dapsone, I don't know if this is really necessary.

I found one paper suggesting Vit E for dapsone induced neuropathies. Since Vit E is easy to tolerate and is an antioxidant as well, it may be helpful for you. I would choose a form that is natural, and which lists the various types included in it...including gamma E.

example:

Vitamin E
(as unesterified d-alpha Tocopherol plus Mixed Tocopherols: d-beta, d-delta and d-gamma Tocopherol)

note that --ol is in the spelling
from http://www.iherb.com/Now-Foods-E-400...tgels/304?at=0

I wouldn't go over 1000IU daily, and perhaps 800IU would be enough.

[jurgen975]

Wow thanks for the help
I have stopped with taking that drug in the summer of 2008

And this is what i have been using from
Alpha lipoic acid&Acetyl L-Carnitine 6400 mg/day
CoQ10 400 mg/day sometimes 800mg/day
Borage oil 5200 mg/day
Normast 600 mg/day


One thing that i found with all the blood tests i have done is that when this started my ALAT went up but doctors didnt think much of it
november 2009 Alat 54
march 2010 Alat 84
okt 2010 Alat 70
today somewhere around 58


1)Could a hyperbaric chamber help
2)I thought that the use of b6 not dangers?
3)Looks like with these alat data n-acetyl cysteine could help what do you think mrs.D

[mrsD]

Your ALAT scores are not really high. But NAC is not difficult to take so you could try it anyway.

B6 used wisely in doses below 100mg a day (maybe 50mg for you) should be okay. The 3 together ..B6, B12 and folate work with the omega-3s to repair myelin. I'd use the active forms for all 3... P5P, methylfolate and methylcobalamin just in case you are one of those people who cannot convert them..the MTHFR genetic polymorphism.

I am not sure about the hyperbaric oxygen. Some RSD patients find it useful. I would worry about more free radicals coming off that oxygen, so I would use antioxidants if you decide to try it.
If you can afford it, I'd ask your doctor and/or the doctors running the chamber for more details.

If your damage is a done deal, and not ongoing, hyperbaric may be less useful. But if you are progressing...then I'd consider it, but research it carefully. I think it is pretty expensive.

[brohar]

Im not saying MrsD is wrong, but currently the only explantion for my neuropathy is B6 toxcicity and I was only taking between 10-35mg a day max. There is a major lack of research on this and i would lean to the safe side if i were you and only take it if you know you are actually deficient.

[jurgen975]

Originally Posted by brohar

Im not saying MrsD is wrong, but currently the only explantion for my neuropathy is B6 toxcicity and I was only taking between 10-35mg a day max. There is a major lack of research on this and i would lean to the safe side if i were you and only take it if you know you are actually deficient.

B6 can cause a sensory neuropathie reed this abstract brohar
http://www.ncbi.nlm.nih.gov/pubmed/16320661

Mrs.D
The doctor who wrote the above mentioned paper didn't think i had a dapsone neuropathie and she is a expert but this new doctor i am seeing thinks after examining my history the use of dapsone is the only thing he can explain till know.
So its not yet proven but i think it very likely because of the reaction i had with this drug.
And after 5 mouths my problems starter very slowly

If i understand the papers you showed me then i should completly recover with now lasting damage.

If have no idea what cost are for a hyperbaric chamber but i think its smart to consult my doctor first