mrsD, I am now completely off the leflumonide and so far my RA is behaving. I was on statin med for high cholesterol, but stopped that months ago and am currently taking the red yeast rice in its place.

So now I am off all PN offending meds and concentrating on my supplements and here's hoping I can see some progress in calming down my SNF symptoms and pain.

Red yeast rice contains compounds similar to lovastatin, and carries a "statin" warning. It may not be 100% safe, PN wise.

It will take some time to resolve, if it is going to at all.

You can help with CoQ-10, acetyl carnitine and lipoic acid.

It will take some time to resolve, if it is going to at all.
************************************************** *

mrsD...I feel like a dagger just went thru my heart. Are you trying to tell me that I may be wasting my time and my money on supplements (that I cannot afford) trying to ease my RA and SFN? This board has always been so encouraging and positive for everyone else. I am only 53 and have had RA and SFN for only 4 years. I am trying so hard to try to get off disability and go back to work to get off this crappy medicare so I can afford my medications. Please tell me why you think I am just spinning my wheels. (I am crying as I am writing this)

No, I am just encouraging you to be patient.

It takes time for healing to occur. The drug you were on, the studies say the neuropathy may resolve... but they don't give time frames.

Also everyone is different. Damage to nerves is tricky and some people heal quickly. I would not take the red yeast rice now at all...it complicates things. Some brands have illegal lovatstatin added to them, and the FDA is always gunning for this product and removing things. Swanson just had some taken off the market just over a year ago! (China is common in the adulteration of red yeast rice before it gets to USA).

People often expect fast results from supplements. We have learned to expect drugs to work fast. Swallow a pill, and that all there is to it. And that mindset is not what works for PN patients at all.

We've had posters here who start to improve in say 3 months.
Those who were low in D and B12 improve faster. The mitochondrial support supplements are slower.

But there are no guarantees here unfortunately. If you saw Dr. Oz yesterday, you'd be afraid to drink water from your tap....he is pushing water filters in the home big time. Lead, perchlorates, arsenic, Chromium-6 etc!

I am so sorry you are feeling alone and in pain that way. It all can be very overwhelming at times. I do not think you are spinning your wheels at all. One does however, need to be patient. Stress is very bad for PN, and seems to make it flare and hurt more. This is an inflammatory response that is difficult to control. We all get that way at times here.

WHY? Because nerves can die in seconds [and in a very painful way to boot] But they regrow about 1/4-1/2" a month! That 'seems' painfully slow? But when you consider ALL your nerves are like plant roots? [Ever take a pot grown seedling out of the pot? All those tiny fibers?] We are talking about a lot of new nerves [or, a heap of them] growing and trying to find and learn their directions and instructions!
All I've been able to learn about nerve re-growth has been hard to find and usually NOT about sensory nerves. What I have learned is the following:
When nerves die-It's a constant, continuous pain until they die completely...if they die completely? There is NOTHING! If partly dead? They will essentially keep trying to 'send' signals to the brain or wherever asking for instructions. Which they may or may not get correctly this time. Depends on the overall damages.
When nerves HEAL? This is a different sort of pain...to me it's eye-opening and downright startling, as I can feel a whole nerve line either tremor of do a lot of ZAPS for about 5-10 minutes. They then either 'connect' or try another route and you get 'relief' of sorts.
So the latter Pains? I sort of look forward to... the others? Well, not a lot you can do for them other than get good suggested vitamins and supplements into you to help the nerves heal properly and more rapidly.
Think of one set of key nerves re-growing at that 1/4-1/2" each month? That many nerves likely equals MILES of nerves! It's your own personal 'highway', in a way, ever see a highway built overnite?
As long as you can FEEL SOMETHING? That IS good! To feel absolutely nothing? THAT is cause for concerns...and call the neuro rite away and see him/her!
Either way, the different pains to me, are GOOD signs. That I still have some nerves to work with! So take that in stride, learn to distinguish the different pains and learn more about how to adequately describe your pain[s]. It's not easy, it's very subjective and each of us feels things differently and, at different 'levels' of pain. 's!! Just do your best to get the best help you can and don't give up! - j

I totally understand the process and patience required with very slowly regenerating nerves. I am even having new pains in my feet which I have not had in over 3 years. Although painful, I consider it progress.

The part of the referenced quote from mrsD that upset me was the "...if it is going to at all." I am sorry for overreacting. Because I very much respect all her knowledge and willingness to help others, and positive disposition--that is why I freaked out.

mrsD, please accept my apology. I was simply trying to let you know how I was feeling in my neurotic (maybe borderline psychotic) words.

Hey cat, I betcha most of us have freaked over PN at one time or another.

hi there
I have lupus (which is a connective tissue disease like RA) and my sensorimotor neuropathy is caused by my lupus. But, treating my lupus has never had any affect on my neuropathy. I even have rituxan treatments, and my neuropathy continues to deteriorate.

So, I have absolutely no faith in the 'treat the disease and the neuropathy will improve' theory. It doesn't with lupus, which is in the same group of diseases as RA, so personally I don't like your chances. I post on a lupus board, many have neuropathy, and they seem to have the same experience as me.

Sorry to be so pessimistic, just the way it's been for me.

regards

raglet

There is no cure for PN. If it is a result of another ailment or disease, treating one probably will have little or no effect on the other. You can be cured of a 'curable' problem, but if it has created nerve damage or nerve death, you still will be stuck with PN- chronic and at this point incurable. PN problems have been known to subside with treatment, or surgery- of nerve compression, but that's another story. So is supplements, and meds, to promote nerve growth.

Dear Raglet, the theory is "controlling" or "putting into remission" the disease that is causing the neuropathy. I gather your lupus has never been in remission and I am so sorry about that. Of course if lupus is not in remission then you cannot halt the progress of neuropathy. I have been lucky enought to undergo 2 treatments of plasmapheresis and 1 of ivig which has halted further progression of my neuropathy past my knees. I hope you can find a treatment for your lupus that will help you go into a remission. There is no way of knowing how long a remission will last as it it not a cure.