a foot above several upright thumb tacks

Have you seen the ad blitz for Lyrica (pregabalin)? A LOT of money is being spent trying to convince the American public that Lyrica is the answer to diabetic nerve pain. One of the most compelling commercials stars a retired policeman:

“Hi, I’m Terry and I have diabetic nerve pain. I worked a patrol unit for 17 years in the city of Baltimore. When I first started experiencing the pain it’s hard to describe because you have a numbness but yet you have the pain like thousands of needles sticking in your foot.”

This sounds awful, and indeed people with diabetic neuropathy suffer terribly. Symptoms can include:

Symptoms of Diabetic Neuropathy

  • Burning, tingling or a feeling of needles sticking into your skin
  • Numbness in toes and feet; an inability to sense a needle prick; reduced sensitivity to temperature change
  • Difficulty walking because of numbness, pain or weakness
  • Intense stabbing jolts of pain, especially in the evening
  • Sexual dysfunction
  • Swallowing difficulties
  • Poor stomach emptying, leading to feelings of fullness and bloating
  • Bladder problems
  • Dizziness on standing

It’s hardly any wonder that patients with neuropathy and nerve pain would be looking for help. A commercial like the one with Terry, the retired Baltimore police officer, is very appealing. When Terry says the “pain started subsiding” after taking Lyrica, we imagine that lots of viewers might think that they too might benefit from this drug. Are they paying attention, though, when the voice-over announcer says:

“Lyrica is not for everyone. It may cause serious allergic reactions or suicidal thoughts or actions. Tell your doctor right away if you have these: new or worsening depression or unusual changes in mood or behavior, or swelling, trouble breathing, rash, hives, blisters, changes in eye sight including blurry vision, muscle pain with fever, tired feeling or skin sores from diabetes. Common side effects are dizziness, sleepiness, weight gain, and swelling of hands, legs and feet. Don’t drink alcohol while taking Lyrica. Don’t drive or use machinery until you know how Lyrica affects you.”

While you listen to the on-air announcer speed through this long list of complications you see Terry working in his backyard planting and watering pretty flowers. Somehow, the scary side effects seem less worrisome in such a bucolic setting.

Here are some real stories from our website to bring the side effects into focus:

This comes from LCB:

“I started taking Lyrica 10 days ago for RLS [restless leg syndrome] and fibromyalgia. I was taking gabapentin but it had stopped working. I gained 14 pounds on the gabapentin, and now I’ve gained 5 pounds more on the Lyrica. I have edema [fluid retention] as well. I’m sleepy for most of the day and I feel like I’m dragging my body around. I have no energy. My husband tells me I’m irritable with the kids, and that I can’t seem to remember things anymore.

“All of this is quite a drastic change from my usual energetic, tireless self. I don’t like how I feel, and to make the most important point: Lyrica doesn’t seem to help much. I still have tons of pain, and RLS at night. So, I have an appointment with my doctor to ask for a change. I believe that these medicines work very well on some people, but we are all so different. It doesn’t work for me.”

T.  had a very scary story to share:

“After almost eight years on Cymbalta, it had lost the effectiveness. My doctor added Lyrica to help with fibro. Soon after, I started to have a deep depression and wanted to end the pain that I have lived with for so long. The stress of life was so great, that I attempted suicide. I was put in the hospital for four days.

“At that point, no more meds! The symptoms are what everyone has described. I feel alone and lost in my own brain fog hell. Not one of my family has a clue what a nightmare this is.”

Kathy listed these complicatons:

“I was on the drug eight months for fibromyalgia prescribed by a rheumatologist. I, too, started having problems with eyesight (my eye doctor could NOT update my lenses due to Lyrica causing severe blurriness). I also had memory loss, anxiety, and trouble sleeping. I suffer from chronic constipation due to diverticulitis, and the Lyrica was making this worse. I weaned off over a three-week period. OMG! The withdrawal was/is terrible.

“I am 9 weeks into it, and still have terrible throbbing ongoing headaches, difficulty swallowing, and went from 134 lbs to 118! I feel like I’m dying most of the time. I went to my current neurologist today and was told there were no such symptoms from Lyrica withdrawal!

“Google it, doctor! Please, if anyone reading this is considering taking Lyrica, reconsider! If you have side effects like I did, then decide to go off; you may be looking at a long recovery and NO help from a doctor. They are all denying any problems with this medication. Please read the “Lyrica Withdrawal” posts first!”

Getting off drugs that affect the central nervous system can sometimes be challenging. As we mentioned recently with our post on Abilify, the track record of psychiatry and neurology has been abysmal when it comes to studying sudden withdrawal from commonly prescribed medications. It took years for researchers to discover that when patients suddenly stopped benzodiazepines such as alprazolam (Xanax), diazepam (Valium) or lorazepam (Ativan) they often experienced very unpleasant withdrawal symptoms. Ditto for antidepressants like citalopram (Celexa), duloxetine (Cymbalta), escitalopram (Lexapro), sertraline (Zoloft) and venlafaxine (Effexor).

The story of Lyrica (pregabalin) withdrawal is also murky. There is very little in the medical literature on this topic. The prescribing information does mention, though, that some patients report symptoms such as insomnia, nausea, headache, anxiety, sweating or diarrhea if they stop suddenly. The advice: taper the dose over at least a week rather that stopping suddenly. We fear that such information is not always that helpful, especially since there is not much practical information about actual dosage reduction.

Lyrica Side Effects

  • Vertigo, dizziness, unsteadiness, coordination problems, abnormal gait
  • Sleepiness, fatigue
  • Confusion, abnormal thinking, difficulty with attention and concentration, accidental injury
  • Dry mouth
  • Fluid retention in hands or feet, edema
  • Blurred vision, difficulty with eyesight
  • Weight gain
  • Constipation, gas
  • Pain
  • Skin reaction, rash, dermatitis (requires immediate medical attention!)
  • Depression, suicidal thoughts or actions
  • Muscle breakdown (rhabdomyolysis), tremor
  • Blood disorders
  • Withdrawal symptoms, discontinuation syndrome, seizures

We recognize that some people with hard-to-treat neuropathy or fibromyalgia may do quite well on Lyrica and not suffer side effects. That’s great. But some patients don’t get much benefit and do suffer complications. For them, Lyrica is not a blessing.

To learn about some other approaches to neuropathy, you may want to check these links about benfotiamine (link 1 and link 2) and alpha lipoic acid.

Please share your own story about Lyrica or your experience with neuropathy and what has worked for you below so others can benefit from your experience.

 

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  1. JP
    NM
    Reply

    In two years of being on Lyrica for fibromyalgia and intense, still undiagnosed, muscle and bone pain with RLS, I have experienced very very little relief with quite a few side effects. My doctor insists there aren’t many treatment options and it’s basically lyrica or nothing. Two years ago I weighed 128. I now weigh 171 and am not happy. I was put on Effexor to alleviate some of the depression, but… Still not happy.

  2. Elliott Kanter
    San Diego
    Reply

    My client was using Lyrica for diabetic pain and was told to stop Lyrica cold turkey and onto another drug. Immediately, he suffered a grand mal seizure. Any similar events?

  3. john
    colorado mts.
    Reply

    I have been taking 400 mg. lyrica for a couple of years now. I managed to stop over 2.5 months but was so sick i started again. it take much long than a week to quit? It has taken me over two months to go from 400 to 225. You must go very slowly or all hell breaks out with stomach cramping and the runs. Plan on staying home if you taper too fast.

    When I asked for help, my doctor told me to just go ahead and quit. I asked about the withdrawal problems and he told me it wasn’t addictive. I went to the town neurologist who really seemed out of it. She tried to tell me it was all imagined on my part as Lyrica wasn’t addictive, sounded more like the oxy mini I take daily to her (I must have quit the oxy without knowing it…). She referred me to a shrink!

    So, yes you probably will be on your own. try cutting back just a tiny bit each week by dumping some into a shot glass. if you get stomach issues you are going too quickly, take a little more for a day. when i get down to say 2.5 caps, i take an empty capsule and dip some in it so you are not throwing it away.

    MMJ helps tremendously and I grew it for this reason. A nurse suggested soma and I have some. Soma seems very similar to Lyrica in how it works. 125 mg, half a tab is plenty for me but it is very addictive so don’t take it unless you get stressed, and you will get stressed. The MMJ, an indica is very helpful. I use a vaporizer made just for that purpose. get some exercise, take walks, etc. I have a dog so I have to do that anyway.

    So, go slowly. if you can cut back 100 mg a month you are doing well. i have read 10% per month and I have been pushing 25%. good luck, tell the people around you and explain how you will be kind of crazy for awhile and why. john

    • JP
      Reply

      This scares the living crap out of me. How many other drugs are so dangerous when stopped cold?

  4. Nicole
    Eunice Louisiana
    Reply

    I have seizures and my neurologist put me on lyrica 50mg 3 times a day along with ativan and zonisimide. I haven’t had a seizure for 8 months but really want to get off all these controlled substances starting with the lyrica. I too get the night sweats really bad even when I’m not trying to taper off and when I do try to taper off which I’ve done multiple times I have seizure symptoms. This all started three years ago when I developed swelling on my brain which led to seizures and now I’m stuck on seizure medicine for the rest of my life and I’m sick and tired of living my life like this tired all the time depressed and on all this medicine!

  5. Delan Robison
    OH
    Reply

    I’ve been taking a Lyrica for a rare nerve disease. I take 200mg 3 times a day. I’m scared to get off it, it’s been 6 years what should I do?

    • JP
      Reply

      I am so so sorry. What are some seizure symptoms you’ve had? I really don’t know what to look for. Please and thank you!

  6. Neicey
    Alabama
    Reply

    Well, (after being on 13yrs.) I am on my 11 week of “LYRICA WITHDRAWAL HELL”. The burning & tingling is not as bad, insomnia is better but not going away, still having some night sweats. I wish it would just hurry up & go. My nerves can’t take much more.

  7. Terri
    Barrie, ON
    Reply

    I’ve had fibromyalgia everywhere since I was 28 and there was nothing at the time to treat it not until the last 8 years so I get lidocaine infusion which is amazing. Now I have to take lyrica here and there past the two week period which is when your body becomes addicted and I never had withdrawals from lyrica but now I can’t pass gas without making a mess of myself my belly is rotten, I have no pick up and go plus all I do is sweat from the waist up it’s day 9 only a month back on it low dose.

    My recommendations are to not take it everyday as it works immediately only take it when it’s really needed then you don’t need to worry about withdrawals.

    All the best!

  8. Karen
    New York
    Reply

    I have severe neuropathy from a thoracotomy that I had in 2007. I’ve been on Lyrica since that time. My family doctor has chosen not to treat me any more for anything. He became insulted after I requested a referral to a pulmonary specialist for an eight week long respiratory infection.

    I have since seen three other doctors. Two of the three will not prescribe ANY controlled substances, by their own choice. The third one hasn’t decided yet. I was completely unable to function after the surgery in 2007. No driving, clothing hurt, only sleeping two or three hours at a time, no appetite, the pain was all-consuming and overwhelming.

    I started on 150 mg of Lyrica a day. I had an immediate positive result. Within a few weeks an additional 25 mg was added to the night time dose to improve my sleep. I felt almost human again, resuming almost all my normal activities. Approximately three years later, I was able to reduce the daily amount to 125mg. This reduction eliminated the extreme sleepiness I had every afternoon shortly after taking my
    afternoon dosage. Other than some occasional drowsiness, I have had no other adverse reactions to Lyrica.

    I was at the point where I could skip a dose if necessary, like on long drives to reduce the risk of drowsiness. About a month ago, I ran out after trying to find another doctor to prescribe it. The pain slammed back!! Including other nerve pain that I didn’t even realize the Lyrica was helping with. (I contracted Lyme disease last year and have neuropathy related to that.)

    The latest doctor has given me a two week prescription while she decides if she will continue to prescribe it. I have not gotten anywhere near the pain relief I had before. I do almost nothing and sleeping has become almost impossible again. I know there are some medications that can give a different result once they are stopped and restarted. Does anyone know if Lyrica is one of these??

  9. Mary
    Windsor, On.
    Reply

    I am not sure if I am having withdrawal symptoms from stopping Lyrica. I think I have been taking it for approximately 11 months and recently informed my doctor that I was stopping them as they weren’t helping. The next day I started feeling poorly and have been consistently getting worse. Feel nauseous, have developed a cough, and haven’t felt good since I stopped taking Lyrica.
    I was not taking because I was diabetic, but had developed Peripheral Neuropathy.
    I found another site which listed 30 different symptoms to withdrawal.
    Could anyone inform me if I am having withdrawal symptoms and how long they will last.
    Thank you

    • Marsha
      20705
      Reply

      I have been seeing a healer who recommends taking glutathione tablets every four hours while coming off the Lyrica. It helps a little. I have just read to reduce it only 10% at a time for a week each. May have to go to a compounding pharmacy to make up lesser doses.

  10. Neicey
    Alabama
    Reply

    I was put on Lyrica 13 yrs. ago because of hormone imbalance migraines, due to a complete hysterectomy in 2001, and the migraines started in 2003. It got to the point that the side effects were worse than the migraines. I fought with my Neurologist for two years and finally put my foot down to take me off. I was taking 150 mg 3x’s day, it tapered off slowly for 9 months going down 25-50 mg every 3 weeks. My last dosage was on 10/26/2016.

    I did OK for 28 days and then INSOMNIA came knocking at my brain. ON 11/24/2016 insomnia kicked in, from 11/24/2016 to 12/03/2016 I got 2 hrs of sleep every other night. On 12/03/2016 after midnight went to ER. BIG MISTAKE. The ER doctor put me on Zolpidem for 5 nights. I slept well, but on day 6, 12/08/2016 no sleep, day 7, 6 hrs of sleep. It is now day 7-8 and no sleep at all. I have been off the Lyrica now 46 days. It is PURE HELL. I am at my wit’s end. I can’t trust doctors anymore.

    Although the insomnia has only been going on for 18 days, I am sure that I will still have problems for at least another 4-8 weeks of this. I have tried OTC sleep aids, and that does not help. Can’t take hot bath anymore due to yeast infections. Can’t drink hot drinks at night or eat chocolate after 3 pm. If anyone has any advice, PLEASE HELP, OMG. I wish I could find out how much longer this was going to last. My poor husband can’t take it anymore.

  11. Aj
    Reply

    I started taking for fun a year ago and never thought it would turn into a addiction, after reaching a very high level of daily dosage 1800 Mg I began thinking of how awful my life is and i should quite immediately, not knowing of how bad the withdrawal is i stopped the day after i put my mind into quiting , the next day was strong headache and not feeling like eating anything , the next day i could not stand and leave bed with my bed full of sweat as if someone pured water all over it stayed in bed for the rest of the day and just woke up for cigarettes , the day after it was the deadliest i felt like my blood pressure was so low and couldnt even open my eyes so i decided to quite gradually, today after a long struggle i reached 75mg a day , and hopefully by the end of this week ill stop for good , i hope people understand that this drug is worse than people getting of herion its the devils drug.

  12. Manderly
    Oklahoma
    Reply

    I’m at my end. Never poison in get legs and along Low back. On 3600 of gabapentin. It has stopped working so working with my neurologist right now to change to Lyrica. I have so much trouble on my life. No one wants to be around me. I don’t understand. I have no concept of time do an always late. I can’t hear what others are saying. I have music constantly playing in my ears. Hospitalized for cellulitis of lower legs. They all say I mentally ill. I think it is such high doses of gabapentin. Please help me figure this nightmare out. Did only listen to my husband and not me. Thank you in advance.

    • JP
      Reply

      What is the draw of taking more than necessary? How does it make you feel? I have a scrip for oxycodone as well, and trust me, I get why ppl would take more of that… Does Lyrica elicit the same kind of ‘high’ or something?

      I’m so sorry you are suffering with this! And thanks for any reply!

  13. Denise
    Alabama
    Reply

    I was prescribed Lyrica 13 years ago. I had to have a complete hysterectomy due to fibroid tumors and a cyst on my ovary. After the surgery, I developed migraines. This was due to hormone imbalance. I started off slowly and gradually got up to 150 mg three times a day with the Lyrica.

    Overtime, the side effects were more painful than the medicine and it felt like my body was getting immune to the medicine. I am now on the verge of being 60, and in the last two years, I have not had one migraine. I told my neurologist that I wanted to get off the Lyrica and try something else, of course his response will there is nothing else but there is.

    I slowly tapered off for nine months going down either 25 or 50 mg every three weeks. I have been completely off the medicine now for 37 days. I had a few problems here and there while going down, but after a month went by I started having insomnia and for six days I only got maybe two hours of sleep per night on the seventh day my GP nurse practitioner prescribed trazodone, I took two capsules which were 50 mg each, although I went to sleep I woke up several times and it took a few minutes to go back to sleep, I probably got between 6and 7 of sleep last night.

    I’m going to try the trazodone again tonight and hopefully it’ll work correctly this time. I know this is just a with drawl side effect and will sooner or later go away but in the meantime it’s miserable.

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