Small Fiber Neuropathy

[baumgrenze]

Has anyone seen information connecting statins and small fiber neuropathy?

My wife and I are enrolled in an aging study at USCF which is attempting to establish a baseline for myelin loss and aging. Part of the initial evaluation involved an exam by a staff neurologist. I described episodic neuropathy which involves the feet, tip of the tongue and the lungs. An earlier evaluation by a local neurologist found no nerve conduction problems. The staff neurologist suggested small fiber neuropathy as a possibility. It is apparently very hard to diagnose.

I stopped 40 mg/day of Lipitor in July 2007 after I complained of tired legs.

In June 2003 I started at 10 mg/day. This was increased to 20 mg/day in April 2006, to 80 mg/day in June 2006, and then decreased to 40 mg/day in September 2006.

My neuropathy symptoms began after stopping Lipitor in late 2007. In April 2008, the local neurologist determined that my B12 titer was low (high homocysteine and methylmalonic acid) and I've been taking a supplement since then. The B12 levels now look fine but the neuropathy persists.

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[David Staup]

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Yes most if not all statin damages have some level of neuropothy symptoms and probably the most common form is small fiber or polyneuropothy. see the following studies:


*http://www.neurology.org/cgi/content/abstract/58/9/1333

*http://www.journals.elsevierhealth.com/periodicals/jns/article/PIIS0022510X02003969/abstract

*http://www.springerlink.com/content/e06m367107290223/


the only mention of a therapy that helps (that I've seen) is large daily doses of B6, B12, and Folic acid...

David

[baumgrenze]

David,

Thank you for your prompt and informative response.

I am following up on the links.

I had found the Gaist paper some time ago. As I recall, it is a highly cited paper and following the citation trail is very time consuming and often not very rewarding because most of the publications are "pay per view."

I've been taking 2 mg/day of B12 since the April 2008 diagnosis. Only recently I changed the supplement to a B12/B6/Folic Acid product because I'd read that Folic Acid aids in the absorption of B12. The price differential at Trader Joe's is inconsequential.

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[Nancy W]

David, I also thank you for the links. I plan on buying some of the articles. anyone have a favorite?

I continue to have polyneuropathy two months out from stopping the Red Yeast Rice. It is better with the supplementation, but not entirely gone. The pain waxes and wanes and travels around. Feet, then legs, then arms then hands and so forth...burning, occasional transient numbness.

I went back to my primary after six weeks of this developing. When I first went there, we though it was vascular in nature and he referred me to a vascular clinic, which ruled out vascular disease. When I returned to my primary caregiver, a new-grad ARNP, he was nonplussed. It was apparent that I knew waymore than him, but he was very willing to work with me on this. I will appreciate getting some of the articles. I got the entire Golomb article...all 100 pages of it with 900 references.

I had him draw a CK to check if muscle damage. He wanted to check Vit D levels, and homocysteine. Will get results this week. I will see the naturopath the third week in October after we get back from being away for the first two weeks.

So glad this forum exists! Nancy

[David Staup]

Nancy,

as to the CK test, be aware that many studies have shown that statins cause myopathy WITHOUT raising CK levels substantially.

when I feel a bit better I'll post some of the studies

David

[David Staup]

sorry I forgot

"http://www.mitochondrial.net/showabstract.php?pmid=12353945&redirect=yes&terms=statins+and+mitochondrial+myopathy

[Nancy W]

David, I am sorry to hear that you are not feeling too well, and I hope you are feeling better again, soon. I have been so appreciative of your helpful replies since joining this forum.

I am aware that the CK is not always accurate. I have not had what I would call muscle pain...no tenderness ever, this time around. I did, way back when I reacted to the Lipitor maybe ten years ago. I did have a positive CK back then, but not now. This time, the pain is more the sharp pain along nerve tracks...sharp, sometimes stabbing, sometimes burning. But as for muscle involvement...fatigue is the only symptom. I think that has more to do with energy production, so am suspicious of mitochondrial damage.

I am responding to the increase in the supplement dosage already, so that is good.

I will eventually get to a neurologist. Taking care of my 88 year old dad keeps me busy. He is having some eye surgery in a couple of weeks. When I get him over that, I will start thinking about neurology and get some info on the MD clinic at the University of Washington.

I have ordered Dr. Graveline's third book, plus two books from two of the other doctors. I have thusfar gotten Dr. Graveline's books from the library. But I realize that if I am going to have to do battle with the allopathic medical establishment, I am going to do it from a perspective of being very well informed on this subject. It has been an interesting four months dealing with my primary physician. In fact the entire year has been interesting, since I have lost confidence in allopathic medicine and am getting more help from my naturopath than my allopath.

Stay tuned...and feel better. Nancy

[Nancy W]

David, I just looked at all the dates on the posts on this topic and realize that I was responding to your earlier post when you weren't feeling well. Thanks for the link! Nancy

[baumgrenze]

I hope this thread is not 'dead.' I am developing new information about my condition that may be of interest to others. I believe that the onset of my neuropathy and my use of Lipitor was only coincidental.

One benefit of the UCSF aging study I mentioned when I started this thread was a referral to Dr. Ann Poncelet, M.D., Professor of Clinical Neurology, Mr.and Mrs. David George Rowe and Stephen W. Rowe Endowed Chair for Teaching in Neurology at UCSF. She is one of the finest physicians I have ever met. She listened, asked questions, and then listened again. When I deviated from her organized approach to taking my history, she made note of my comment and came back to it later. She recommended a dozen tests. The last to be done, amyloid in abdominal fat, was the only one that returned 'positive' results. The slides were read both by a Stanford pathologist and Dr. Poncelet's favorite neuropathologist at UCSF with the same result. Amyloidosis is a complicated syndrome. We are still trying to place me in the spectrum of the disease. If people express an interest I will try to return and update this post as I learn more.

Here is a link to use if you want to learn more:

*http://www.amyloidosis.org/amyloidawareness.asp

Those of you who are suffering from neuropathy, please ask your physician to eliminate amyloidosis as a possible underlying cause.

I believe it is important that I came back to the forum to share this perspective. I hope it can be of use to someone else.

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[Nancy W]

No, the thread isn't dead. Thanks for the link. Went there and looked at the booklet about amyloidosis. Good information. Other than the neuropathy, which has improved since it's onset, I don't have any of the other signs, but I am going to keep that link, and should things change, I will make sure to bring it up!

[baumgrenze]

Just to close the loop on my post, since I last wrote, the pathology team at Stanford stained a new slice from the abdominal fat biopsy and concluded that it is negative for amyloidosis. This fits the results of a large battery of other tests. I lost a diagnosis but a very unpleasant one; the standard treatments are either a liver transplant or a stem cell/bone marrow transplant with chemotherapy.

I saw Dr Poncelet again this week. She is convinced that the symptoms I present with are not likely to be neuropathy related. At this point the only logical connection between my symptoms and my physiology is that the pain signals are probably being generated in the brain, not in the organs apparently affected. She want to monitor my condition on a yearly basis.

She suggested that I consider working with a pain management team, perhaps using biofeedback, with the idea of using neuroplasticity to minimize or eliminate these unwanted signals.

I will try to remember to return here to report if there are any substantive changes in my condition.

My primary care physician has persisted in his concern about my lipid profile; I am back on 10 mg/day of Lipitor. What goes round, comes round. We shall see.

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[Nancy W]

Let us know how you do. It is interesting to read postings people share over time.

I am reminded of this analogy...in my mind I see frontiersmen wandering off into the hinterlands. In the forty years I have been in medicine as a physical therapist, I have only come to realize that there is an entire universe contained within each human body, and that as much as we think we do know, there is so much more we don't know.

Good luck, and thanks for the update!

Nancy

[lars999]

baumgrenze,

Now that you have regressed to taking Lipitor again, I would hope that you take a very effective formulation of CoQ10 (one that easily dissolves in blood), as is recommended in Canada and European Union, but not USA. USA FDA and NIH still havs their heads in the sand, or somewhere more convienent, on this matter. This has been known to drug companies for decades -- Merck even has two patents for pills combining statin and CoQ10. Merck has never used either patent. Your doctor likely does not know any of this.

Much of adverse effects of statins are direct result of statin drug lowering essential biochemical, CoQ10, about as much as it does total cholesterol -- that is 40-50%. Couple the nasty effects of lowering two such essential biochemicals as CoQ10 and cholesterol (as well as lipoproteins), and your body is operating under severe depletions, starvation even, of crutial biochemical production lines, Mevalonate Pathway and Krebs Cycle. SO, ALL your cells will be energy depleted, even starved, as well as, forced to operate with much reduced ability to maintain structural and functional integrety.

And then there are the drastic effects statins have on the diverse and critical roles that dolichols play in operations of human bodies. Basically, they fullfill a huge number of "messanger molecule" roles, without which our bodies biochemical processes cannot operate.

Your doctor likely simply does not understand anything written in this post. Mine did not. Nether does my present GP. Both are cholesterol quacks.

IF you are over 65 and have no prior history of cardiovascular issues or heart attack, statin drugs offer you nothing but expence and nasty side effects. IF you are female, statins offer you nothing but expence and nasty side effects.

Lars