HOW will stinging/burning in feet end?

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

HOW will stinging/burning in feet end?

Postby mgguy » Thu Mar 01, 2007 1:59 am

I had taken Lovastatin for over 3 years before stopping it 7 weeks ago. For several months I have has burning and stinging in both feet simultaneously. The director of the UC San Diego Statin Study said it can take 10 weeks or longer before my symptoms begin to go away. Has anyone had this kind of peripheral neuropathy damage from statins that ever lessened or went away? I would like to know how long it took to notice improvement and how long it took for it to go away completely. Does it lessen gradually over several months, or quickly? I have not seen anything on this on any of the statin-related forums I have visited. If you have experience with this, please share. I will be eternally grateful! :D
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Postby catspajamas » Sun Mar 04, 2007 8:56 pm

I have periferal neurapathy like you are describing...I went off zocor 5 years ago and the pain in my feet hasn't improved...I would be prepared for a long recovery time(if any)...I am resigned that I will have some nerve damage the rest of my life..It not only affected the nerves in my feet. I also got shingles..and a very weak immune system.....good luck...read the posts here and you will find some very good ideas about helping pn or muscle problems caused by statins...
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Postby Darrell » Sun Mar 04, 2007 9:07 pm

You might consider taking the dietary supplement Acetyl-L-Carnitine:
[http://care.diabetesjournals.org/cgi/content/abstract/28/1/89]
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Postby mgguy » Mon Mar 05, 2007 7:01 pm

Catspajamas- Thank you for your reply. It is not very encouraging. The podiatrist I saw thought I would get full recovery, as I have not experienced any numbness. He thinks it would take 3-6 months, or even a year to go away completely. If no improvement in 3 months, he wants to do nerve damage test. I am still hopeful that this will pass someday, but up to this point I have noticed no improvement. I have also been battling a post-nasal-drip throat mucus-sinus problem for over 1 yr. and wonder if Lovastatin might have contributed to that too. I understand that it could be a form of neuropathy.

Darrell- Thank you too. I have been taking 500mg Acytel L-Cartintine (ALC) for 2 weeks and Q10 for 6 weeks with no noticeable improvement. I think the ALC might be causing me some insomnia (early awakening and not being able to go back to sleep). Do you know if anyone else has had sleep issues with it?
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Postby Biologist » Mon Mar 05, 2007 9:57 pm

mgguy,

You may want to increase your dosage. That website Darrell cites says the following:

"We evaluated frozen databases from
two 52-week randomized placebo-
controlled clinical diabetic neuropathy
trials testing two doses of acetyl-L-
carnitine (ALC): 500 and 1,000 mg/day
...Pain as the most bothersome symptom
showed significant improvement in one
study and in the combined cohort taking
1,000 mg ALC."

I take 1,500 mg per day and may increase to 2,000 mg. Why not? It is not known to be a problem to my knowledge.

On the sleeping, there was a week or two where I wondered if this was going to be the new routine for the rest of my life. I was waking up real early and not able to go back to sleep. But that has pretty much gone away. That probably started about 2 months from the time I quit statins.

I am undecided on whether ALC had anything to do with it, but I don't really think so. I now take it without much concern about one-half hour before supper (empty stomach for better absorption). I take the other half in the morning before breakfast. Probably will start doing another dosage before lunch.

Nerve cells are slow to replicate, and maybe to repair.

Biologist
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Postby cjbrooksjc » Mon Mar 05, 2007 10:15 pm

Catspajamas: From what I've read, both CoQ10 and l-carnitine encourage activity in the mitocondria and could make you a little'peppy' if you take it too late in the evening. As long as you don't take it after, say, 3PM, you should not feel energized, and it should not cause you to awaken. That is only my reasoning based on what I've been able to read about the supliments.

Brooks
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Postby cjbrooksjc » Mon Mar 05, 2007 10:51 pm

Catspjs: Here is another,earlier string from Ray Holder regarding L-Carnitine; also a warning to take it earlier in the day.

####

One other point is that you may have a job to sleep at night if you take some too late in the day. Opinions vary as to when it is best to take it, I take mine first thing in the morning and that is what WA recommend, but I have seen others say distributed doses.

####

Brooks
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Postby mgguy » Tue Mar 06, 2007 1:25 am

Biologist-thank you for your response. I will up ALC to 1000 mg to see if it helps and will post the results.

cjbrooksjc-thanks. I will take the ALC in the morning to see if I sleep better and will post the results. I am also taking Q10, cod liver oil, and wheat germ oil as recommended by the UC San Diego Statin Study director; I wouldn't think those would affect sleep.

Does anyone know of anyone who has recovered from statin-induced nerve damage (neuropathy) and what they say helped them, how long it took, etc.? Most of the forum posts I've read suggest it takes a long time and may never reverse completely. Its very discouraging but it always helps to have hope.
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Postby Ray Holder » Tue Mar 06, 2007 11:08 am

Hi mgguy
I read again a piece in View from the outback about Dr Peter Langsjoen's paper, indexed as Cardiologist Publishes article on adverse effects of statins on his patients.

I have pasted his concern in the paper of the effects below :-

Statin drugs represent a class of cholesterol-lowering medications of remarkable profitability and popularity that have changed the practice of medicine with ever-changing guidelines that have become increasingly onerous on both patients and physicians alike, with increasing financial and physical burdens. It is becoming clear to practicing physicians that this struggle to obtain an ever lower cholesterol level is accompanied by a substantial decline in quality of life, which limits patient compliance with drug therapy and strains physician-patient relationships.

The paper itself is copyright, I had to pay $20 to see it, but a lot is on the Outback website. You will note that he quotes a drop in periphal neuropathy from 10% to 2% over the study period.
You may be able to see the paper via a medical or other library if you have access to one.

Ray
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Postby cjbrooksjc » Tue Mar 06, 2007 12:04 pm

mgguy: I would NOT take the CoQ10 at night either; it too can cause restlessness and for the same reason.

Regards,

Brooks
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Postby cjbrooksjc » Tue Mar 06, 2007 12:07 pm

Ray: I got an error msg from Earthlink when I tried your Austrailian url. Are you sure it's correct? Can you link to it directly from your thread?

Thanks,

Brooks
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Postby Ray Holder » Tue Mar 06, 2007 3:06 pm

On checking I see I have left out a tilde ~ between / and rick in the URL

It should read- [www.home.earthlink.net/~rickhgtx/outbak25.htm]

I usually try them before submitting, but was in a bit of a hurry

Ray
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Postby cjbrooksjc » Tue Mar 06, 2007 5:43 pm

Ray: Got it. Excellent article, AND the cotten picker's from Texas; about 90 miles to my East! What a serendipitious event; you made my day!

Many Thanks,

Brooks
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Postby Cat Mom2 » Sun Apr 01, 2007 7:11 am

I have that itching/burning/swollen feeling in my feet still and I have been off of them since July 2006 (10 months now). At first it seemed to have gotten 10 times worse for several months and while it still bothers me, at times it don't bother me at all.... but the lumps/swelling NEVER goes away. Sometimes I could swear they look smaller but other days, I could swear they are bigger.

What chaps my hide is I saw FOUR different doctors about this and all but one sluffed me off like I was a idiot. Only one sent me for tests and those were tests on my LEGS... Two gave me fluid pills that never touched the swelling/lumps... and I first noticed that swelling/lumps early into starting on them.

I can't help but wonder what permanent damage has been done and what problems this will creat in the future. I have often thought of going and insisting they do tests to find out exactly WHAT this is..... but that would be feeding the system that created the problem to start with...
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Postby mgguy » Sun Apr 01, 2007 3:28 pm

Cat Mom2, you say it doesn't bother you sometimes, but does this mean the burning/itching sometimes goes away or that you have just learned to live with it? I have been off Lovastatin for 12 weeks now and I have noticed no improvement in my burning/stinging feet and sometimes shooting pain in hands. The more time that goes by without improvement, the more I start to worry that something far more serious may be causing it. I am aware that it can sometimes take several months for any improvement to be noticed, but I still have my doubts as to whether I will ever recover. I have had extensive blood tests, all negative, and I am kind of scared to go back to the doctor for more tests because I am afraid of what else they may find. I think I will wait it out a little longer before going back to doctor... Thanks for sharing your experiences. It helps with my morale.
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Postby poohhel » Tue Apr 03, 2007 3:28 pm

[quote="mgguy"]
Does anyone know of anyone who has recovered from statin-induced nerve damage (neuropathy) and what they say helped them, how long it took, etc.? Most of the forum posts I've read suggest it takes a long time and may never reverse completely. Its very discouraging but it always helps to have hope.[/quote]

mgguy as Biologist suggested in previous reply
[quote="Biologist"] Nerve cells are slow to replicate/ repair.[/quote]

My doctors said the same thing about nerve cells, they will eventually repair themselves but at a very slow pace, if that is the problem. At first I had the numbness/neuropathy in both arms from shoulders/neck to fingers and in legs from butt to toes, but since stopping Vytorin and starting Gabapentin...now the numbness is only in my toes, fingers, butt, and biceps. The rest of my body experiences a constant burning feeling especially my feet. I am scheduled for an electromygraphy and nerve conduction velocity test next week. If that comes out clear then we are doing a doppler ultrasound and an ABI test to check for PAD.
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Postby mgguy » Wed Apr 04, 2007 12:24 am

Poohhel, thank you for your reply. It helps to know that it may take some time to heal. But it is hard to keep a hopeful attitude when now 12 weeks have passed since quitting statins with no noticible improvement. It requires a lot of "self talk" to keep a positive attitude and be patient. But I guess the bottom line is that there is not much else one can do but to wait it out and see what happens. It's great that you are improving, and I hope for your continued healing. What is PAD? Is that something that may have been triggered by statins, or rather something else that you may have had all along that you thought was an effect of the statins but wasn't? Thanks again for sharing your experiences--very encouraging.
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Postby poohhel » Wed Apr 04, 2007 7:14 pm

[quote="mgguy"] What is PAD? Is that something that may have been triggered by statins, or rather something else that you may have had all along that you thought was an effect of the statins but wasn't? Thanks again for sharing your experiences--very encouraging.[/quote]

PAD is Perpherial Artery Disease aka Perpherial Vascular Disease, from what I understand it is not brought on by statins. But the numbness, burning, and pain such as with the neuropathy are the same symptoms for PAD aka PVD... so my doctor wants to test for that so we do not mistakenly accredit these symptoms to the statins later to find out it is more than that . . .

Today, the pain was worse than is has been in a week...but from what I read this is a common set back. I too wish I could be more assured of a full recovery, it has really been depressing and emotional. Not to mention, my husband and I are supposed to be going on a European cruise in May but without being able to walk more than a few minutes at a time I have a feeling this is going to be miserable, and I found out today I can only get 1/2 of my money back if I cancel the trip now... I really cannot afford to lose that money... so I guess I will endure. If you know of any pain medications that might help me get through my trip without dragging me down too bad... Please let me know. Thanks :?
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Postby catspajamas » Wed Apr 04, 2007 7:24 pm

I take a darvocet when the going gets rough...you might ask your Dr for a prescription....yes, its a narcotic but you can't live your life in pain either. I find now that if I take just a half of one it helps just as good as a whole one. I also bought a pair of good walking shoes...the type with a high toe box like diabetics wear.....they don't put any pressure on my toes...expensive but the best thing I have bought myself in years. I had my shoes special made at the foot dr's . Footsmart catalog has a nice assortment and they aren't "grandmaish " either...www.footsmart.com...look for the ones recommended for diabetics.Wish I could go with you on your trip.....
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Postby poohhel » Wed Apr 04, 2007 8:12 pm

[quote="catspajamas"]I take a darvocet when the going gets rough...you might ask your Dr for a prescription....yes, its a narcotic but you can't live your life in pain either. [/quote]

Thank you, I actually have some darvocet from a surgery only a month ago...maybe I will try them out and then ask for more, hehe. I wish I could afford to take all of the forum members with me.
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