Lyrica for Peripheral Neuropathy
 

I have been suffering with Peripheral Neuropathy in my feet for 2 years and after many tests, all negative, a reason for this condition is unknown. My pain has increased horribly over the past year and even with taking Neurontin 2400 mgs a day, I was still in horrible pain. The other day my podiatrist put me on Lyrica (although we tried this before and the insurance company refused the coverage), he gave me samples for 2 weeks, 50mg 3 times a day and then to switch to a perscription he gave me for 150 mg twice a day. My problem, I started the Lyrica, stopped the Neurontin and am now in such unbearable pain, I cannot walk, all I want to do is cry it hurts so much and I am finding strained muscles up and down my legs from the tension I am feeling. Should I go back on the Neurontin along with this Lyrica until the Lyrica kicks in? I cannot exist like this, I am not myself.

Was this a neurologist?
Absolutely ridiculous!
Your doc should have given you a titration schedule to cut back on the neurontin and increase the lyrica gradually over a period of 1-2 weeks-dependent on how much you have been taking in the past.
It amazes me that a doctor hasn't bothered to keep up with proper changeover/switch procedures. You cannot just stop one and take the other.
This could be dangerous!

My primary doctor said the same thing after I called him over the weekend. So I am now taking 150mg lyrica twice a day and my neurontin until the lyrica kicks in I guess. I just seem to be in more pain, I am so frustrated with all of this. by what you said if he reduced the neurtontin I swear the pain would be unbearable.

Possible Gluten Sensitive?
 

I am sorry to hear about your what you are going through. I to am dealing with peripheral neuropathy mainly in my legs where I am in pain almost all day long.

I have been deemed as having Idiopathic nueropathy from my old Nuerologist. My new neurologist just tested me for Gluten Allergy and my levels came back extremely high. I am not starting a Gluten Free Diet (along with weekly B12 Injections). I have been reading that this can take 6 to 12 months (on a gluten and wheat free diet) to start feeling relief from this diet if you are gluten sensitive.

Have you tried seeing if your are Gluten Sensitive? Gluten Sensitive can cause Nueropathy and Fibromyalgia symtpoms. It might be worth a try

God Bless,
Ron

Hi Ron,

I have a very painful peripheral neuropathy for 7 months now. I had a Gluten Intolerance/Celiac Disease Test and came out negative. However, due to the pain, I was willing to go on a gluten free diet. I started it a month ago. I read too that it will take awhile before one can feel a relief from the symptoms after you started on a gluten free diet that is why I was surprised when my primary care physician told me yesterday that I should start feeling better after a month of gluten free diet!!! :eek:

I have been gluten free for quite a while. The supplements were key. Then, going sugar free was the last key! Even with normal glucose testing, sugar is not a friend of nerves.

I am sorry you are in pain.

I have been dealing with if for 10 months now. I am hoping that Gluten Free gives relief over time. I have read that 1 month doesn't do anything on this diet.

I heard B-12 injections are really good too (which can also take a long time for it work also to help regenerate our nerves). I also take 1200 mg daily (2 pills twice a day of quality brand Alpha Lipoic acid).

I got Neuropathy from taking the antibiotic called Levaquin (For 10 days). All my neuro and blood tests too were negative as well to try and find an underlying condition. This was the 1st test that came back Positive since I have started my search to recovery in the last 10 months.

Have you been able to try and figure out what could have caused your neuropathy?

Me, too, is on supplements which I found in this thread.
I do not add sugar to any of my food and I limit my sugar intake to only 40mg a day. But I eat a lot of fruits, I dont count the sugar content of fruits.
How do you have a totally avoid sugar? sugar is basically in all food.

What test was this that came back positive? And how soon after taking the Levaquin did your neuropathy start and how was the positive connection made - that the Levaquin was unequivocally the cause?

I actually felt Hip burning pain while i was taking the levaquin, but the pain in my legs and hands started about a week after wards and gradually increased. I am not sure yet which gluten-wheat test came back exactly but i'm getting the results next week mailed to me so I can let you know then the exact test it was. I spoke my doctor yesterday and he told me that my levels were extremely high that showed that I am gluten sensitive. Hopefully this what will get me on the right track to recovery.

I did research online about levaquin and neuropathy so this is how i put it all together. It took me almost 5 months to realize that it was the levaquin actually can cause neuropathy.

I am taking 5000mcg VitB12 (Methycobalamine) and R-Lipoic Acid 100mg, among other things.

Oh, I have been into all kind of tests and they all came back negative, even my Skin Biopsy is normal. I was told though, in this forum, that PN, in its early stage comes out normal in the skin biopsy.

I read Mrs.D's recent post about TB medication that could cause PN. I was on TB medication for 9 months in 2000 (or 2001). I also had flu vaccines for the past 3 consecutive years. These two factors are mentioned to be causative of PN. Although I am not sure if these are the real causes of my PN, I am taking supplements for Mitochondrial damage. Anyway, I was already taking the recommended supplements on Mrs.D's Supplements, etc. thread even before I read about the TB meds.

God bless.

Thanks for the information. Do any of your doctors believe that the levaquin caused your PN? And if so, what is their treatment for it?

Levequin and most antibiotics can cause it. It is awful. I just sat with my doctor yesterday and he can't think of any to use if my diverticulitis acts up worse. Cirpro, Levaquin etc. are used for it. I can't take it again and start over. :( I know Levaquin caused my problems. Common.

Reg. docs have no clue how to help the nerves heal. Integrative docs do. The Alpha Lipoic Acid, Benfotiamine, l carnitine, fish oil, b12, etc. and in my case no gluten or sugar, LOW carbs, no bad carbs. I have no blood sugar problems, but nerves do not like sugar. I am so much better now. The PN is almost gone. Still working on Autonomic Neuropathy. (Dysautonomia)

I have no idea what to take now. Slim choices on "safer" less toxic antibiotics.

Did your PN symptoms start while on Levaquin or later? Because the half life of both cipro and levaquin is such that about 20 hours after your last dose it is out of your system. So, if during the course of taking it your nerves were damaged why would the symptoms be delayed, if indeed they were? Why wouldn't the PN be evident while on it or shortly thereafter?

Where did you read that those antibiotics leaves your system after only 20 hours?

Hi Shults, I have had the same problem with my feet for 2 years. The pain is unbearable. I can only wear very soft open toed slippers that close with velcro. I had to go to a pain clinic and the Dr. there helped me so much. I take 300 mg of lyrica at Breakfast & supper; 60 mg cymbalta at breakfast; 30 mg morphine at supper; oxicodent at 4pm ; a sleeping pill & oxicodent before bed. this makes the pain bearable but I am looped some days more than others. I manage. Hope you feel better, take care June

So probably a bit longer for Levaquin.

Doc

There is a pharmacological concept called "delayed drug toxicity".

It is complex, but exists for many drug entities. For example, the tendon ruptures from fluoroquinolones can happen up to a year or more after stopping the drug. It took over a DECADE to figure this one out.

Drugs that damage cells/DNA or that set off an autoimmune cascade, are actually exhibiting delayed toxicity.

You can Google "delayed drug toxicity" for more information.
Suffice it to say, delayed toxicity typically appears post marketing and does not show up in many drug studies that the FDA initially requires. Several fluoroquinolones have been taken off the market for this reason. There were at one time many more than we have available now.

Here is an explanation of delayed allergic reactions that occur long after the suspected trigger drug is supposedly gone from tissues: serum sickness is possible with some antibiotics:
http://www.nlm.nih.gov/medlineplus/e...cle/000820.htm

Steroids exhibit also a trait, after being taken, they can trigger bone necrosis which typically attacks the hip, which can fester for months/years leading to destruction of the joint. This is a delayed toxic event also.

My concern is that patients are self diagnosing that their PN is the direct result of taking Cipro or Levaquin long after they've taken it without any diagnostic test to prove this. If the PN didn't happen while they were taking these drugs it seems less reasonable to suspect that it was the cause if the PN happened weeks or months later.

PN is not an insidious condition happening inside us without knowing it. If the nerves are damaged then we should feel it very soon while taking it. Like heart damage with Vioxx or osteoporosis with Femara - these things are happening to our bodies while we are on these drugs but don't feel the effects (unless you break a hip or have a heart attack) and they have to be diagnosed with medical tests.

Other drug side effects are outward and would be felt while taking the drug - like flushing with niacin, or a rash or swelling of the tongue or hives, etc.. So, too, with PN. The symptoms would be more likely to be felt while on the drug, IMO.

Aspirin can cause tinnitus (it does with me). So, can I conclude that I took an aspirin 10 years ago and if I now have tinnitus that it is the cause?

In reading blogs of people who had many bad side effects from these drugs most started soon after taking and while on the drugs.

I think we need to proceed with caution when trying to make a direct connection to PN and drugs unless we have these symptoms while on them or shortly thereafter - not weeks, months or years later.

I think your a little off on your judgment. I am 32 years old, Healthy and fit. I actually had burning type pain while taking the medication. My bone head doctor told me to continue taking the meds because both of us didn't read the label that is on Levanquins warning sheet that reads if you experience any burning, tingling, or pain sensations to stop taking the meds immediately to prevent any irreversible nerve damage. I hear what you are saying but I don''t think you can compare Niacin, and Aspirin to a heavy antibiotic like Levaquin. Levaquin (fluoroquinolones) drugs actually cross your Brain Barrier.

If only it were simple. My doctors have spoken with me about all of this and they keep trying to find a better medication for next time I need it. Damage can happen later for sure. Not just with Levaquine, so many drugs have terrible effects later. I have read so much about it and spoken with doctors and pharmacists. Not rare at all.

It is important to me to learn from things that happened and do all I can to correct the damage and not repeat. VERY hard since so many meds cause these problems.

I think you made my point. Your symptoms started while you were on the drug. All drugs have side effects and you can probably find every conceivable side effect and find at least one person who has experienced it with every conceivable drug. Making the direct correlation weeks or months later is a heavy lift, IMO.

That would be nice if it was the case most of the time. It is well known though. Sadly, the damage can take a while to show up.

I hope you find the help and healing you are seeking. You are a very determined and educated person and that is so important. To be proactive. Good luck.

Thank you. I have been studying for three years about POTS, since getting it. Autonomic Neuropathy and PN. That is how I got better and keep improving.

With my CFS, that was also important. It is up to us to do the work. I have good doctors, but many doctors know nothing about POTS or CFS.:confused:

I'm sorry - I'm sure you've explained your diagnoses before but what does POTs and CFS stand for and have you been diagnosed with Autonomic Neuropathy by what kind of doctor?

CFS is Chronic Fatigue Sydrome. I have had it 20 years, since I was young. It got out of hand because most doctors know nothing about it or supplements. I did find integrative doctors finally.

POTS is a form of Dysautonomia. VERY bad to have. Postural Orthostatic Tachycardia Sydrome. HIGH heart rate when sitting or standing, severe fatigue, nausea, digestion problems, dizzyness, horrendous lightheadedness. Just a few symptoms there. Many faint, but I have Pre Syncope so I know to be careful. I have notice when I will faint.

I have improved thank goodness from being in my wheelchair or bed at all times to being about to walk again.. I just cannot walk for a long time yet. The blood pools, will not stay in the brain and heart. As the nerves continue to heal, they are able to work with the blood vessels and muscles to keep blood up and fight gravity.

I keep track of my heart rate and blood pressure.

I took Levaquin for Diverticulitis three and a half years ago. A few months later I noticed I felt dizzy and faint, but it would go away. Then on my anniversary three years ago, every automatic thing in my body stopped working. Bp, heart rate etc. I had no relief. Ill 24 hours a day. No reg. doctors including cardio docs knew what was wrong.

My integrative doctor tested me and found it was Autonomic Neuropathy. I was too ill to travel to see him for months though. The Autonomic Neuropathy causes half of the POTS illnesses. Only one million or fewer people have this.

I also have PN, often comes wiith the Autonomic Neuropathy. That part is almost gone. You can get much better with POTS, but I have never heard of getting well.

I am thankful for supplements! And doctors that told me to also stop sugar and only eat good carbs for the nerve health also. :D

Wow! You certainly have been through a lot but seem to have found some things that have allowed you to progress. That's good. What are integrative doctors and where do you find them? Are the MD's? Are the symptoms of Autonomic Neuropathy similar to PN? Sorry if you have answered all these questions before.

I still remain skeptic of the "took this and then this happened weeks/months later therefore it was because I took this" mind of thought. But even if that were true, it is my understanding that ideopathic PN is permanent so regardless of what (if anything) caused it (since it is unknown, anyway) - the best one can hope for is to get the rest of their body healthy and hope the symptoms are helped.

ideopathic pn is not necessarily permanent, or not necessarily anything for that matter. its just cause unknown. there are a few potential causes that can be treated with vast improvement shown. there are people who have posted here, were ideopathic at some point and either later learned what their cause was, or never learned the cause but provided themselves with the tools their body needed to heal nerves and are today almost completely healed and living normal lives. dont give up before you even start.

Integrative MD's are what I have. They use regular medicine when needed. BUT, they know all kinds of other therapies, foods that are good, supplements to use. :D I have a cold right now and I am using supplements for that also. Yes, medical doctors for sure.

You can look online for doctors in your area or even ask reg. MD's if they know any. Like all doctors, some are a perfect fit and some might not be. Takes a while to find the right one.

Autonomic Neuropathy is not the same as PN. It is all inside the body.


http://emedicine.medscape.com/article/1173756-overview


http://emedicine.medscape.com/article/1173756-clinical

Autonomic neuropathy is peripheral neuropathy that is affecting the autonomic nervous system. you can have autonomic neuropathy by itself, or in conjunction with PN of the senory nerves or motor nerves or if you are really lucky both sensory and motor nerves.