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. Judy
    Tennessee
    Reply

    I have been on lyrica 75 mg 2x daily and neurontin 800mg 3x daily now 3 weeks. I’ve have had fibromyalgia and lupus now for a year and had just been taken neutrontin. Since I began lyrica. I have been having blurred vision, muscle pain, depression and a rash with my lupus butterfly facial rash. Is it too soon for me to benefit from the lyrica? I just want relief. I felt as if I have the flu everyday. After talking to my dr he said give it time. But how much time?

  2. Dale
    Canada
    Reply

    Well, after reading all of the above, I know now what the heck is going on. I had a total hip replacement and the surgeons stretch my siatic nerve and now I have drop foot and nerve damage down the outer part of my leg. I started lyrica 3 months later. It was not too bad at first but then the weight gain,not being coherent most of the time,anger, sadness,unwillingness to be part of my family, so much has been happening to me and my Doctor shrugged his shoulders and basically said deal with it. So, I am. I knew I couldn’t stop taking it cold turkey so I am weaning myself off also. The side effects are almost as bad as the pain itself. I just took my last pill yesterday morning. I was up most of the night terrified for some reason. I woke up not breathing, then heart pounding so hard I really thought I was having a heart attack. I was almost to the point of calling for help but then as I sat up frightened I started to read about withdrawals. I talked myself down and am still fighting to get off it. Because I now know what to expect I will deal with it myself. Now , I just don’t know what to do about the actual pain itself. I will be gun shy from here on in. Maybe I will get my family back.
    thanks for all the help each and everyone of you have given me. Take care of your-selves!

  3. Hallie
    Reply

    First off, I just want to say that for all these people posting about cost, that there’s an assistance program through pfizer for lyrica and many other meds. I’ve been getting mine free for 4 years. Secondly, I have not gained weight while on it or had any swelling. I’ve actually lost 85 lbs while on it. If I didn’t have it , I wouldn’t be able to get out if bed with all my chronic pain and fibromyalgia, two badly herniated discs, one bulging disc at c5, migraines, ibs, insomnia , anxiety and depression. This med is the only reason I can move. I’ve unfortunately run out about two weeks ago thanks to my dr not faxing correct papers . So I started withdrawing off it after 4 years being on it. Not a good feeling , but nowhere near the hell of coming off Cymbalta. That med will kill you.

  4. Kim
    Oregon
    Reply

    I have been on Lyrica since 2007 for Fibromyalgia. Over the years, I have had to obtain pre-authorizations from my insurance carriers time and again. I had to utilize co-pay assistance cards in order to afford this drug. I just changed insurance carriers and instead of paying $30 copay/month, I found out it has increased to $250/month! I need to wean myself off and just going from 200 mg/day to 100 is causing withdrawal symptoms in a two-day period. I am scared as I had to wean one time before when I was waiting on a pre-auth and withdrawal symptoms were very scary. I could not sleep, had cold sweats, inner trembling and all over itching. My depression was overwhelming, racing thoughts, anxiety. Well, here we go again. Only this time, I have no choice but to get off of it. I see my doctor in two days to start on gabapentin. I have no idea if it will help with my withdrawals. I wish I never would have started Lyrica to begin with! Once you are on it, be sure you have the means to stay on it; because you are pretty much stuck. Someone please tell me if gabapentin will help me with my withdrawal symptoms. Thank you.

    • Hallie
      Ohio
      Reply

      You do realize pfizer has a medication assistance program? I’ve been on it since 2011 for my lyrica. I ran out two weeks ago thanks to my dr. Going through withdrawals now.

      Gabapentin is not even close to lyrica in being helpful . I’ve tried both . I’ve never had any issues with lyrica ; swelling , weight gain , sleepiness .. Nothing . I’ve even lost 85 lbs while on it .

      • Kim
        Oregon
        Reply

        Hi Hallie,

        Yeah, I am using the Lyrica Co-Pay Assistance Program now. The card takes off a maximum of $70/month. My doctor rewrote my prescription and we somehow got my price down to $80/month (after the assistance program took the $70 off). My doctor’s office will be fighting this with my insurance company since my withdrawals are terrifying. So I am back on my 100mg twice a day and feel back to “normal” (whatever that is).

        As far as the medication, I too have never had side effects from Lyrica. Right away, it helped with my fibromyalgia pain. It’s the withdrawal effects that concern me. I think for now, I will have to continue on Lyrica. My central nervous system has grown accustomed to the medication; to stop it after 7 years of usage has too many adverse effects on my body.

        There is also a psychological component to this as well. Lyrica helps with my depression and when I was withdrawing from it, I had all kinds of horrible thoughts. I have had a major tragedy happen in my life that has rocked my world. To be having withdrawals on top of that is way too much for me to handle.

        I hope you have some resolution to your situation–either getting back on the Lyrica or getting through these awful side effects. I wish you the best of luck.

        Kim

  5. Ron
    AZ
    Reply

    Been taking this for 3 weeks and I’m getting some relief, but still have back pain. Had fusion back surgery on disks 4/5 02/27/2015 and I’m still in pain, but I was in horrific pain before surgery. Tried Gabapentin (Neurontin), and would be eating a burger at Carls junior and would start crying, not out loud, but tears would come down my face, stopped taking that. After my surgery, I’m still in pain and have to sit for my job which pisses my back off.

    So I started taking Lyrica 75mg, then just upped it to 150mg and it seems to be helping a little bit, but I have dry mouth and my eyes are watering pretty bad, I thought it was from allergies till I started reading here. Still have to take percoset anyway, so I’m going to stop taking the Lyrica today and it is very expensive, the doctor gave me a prescription to move me to 300 mg which would have been $290 a month, told the pharmacy I didn’t want to pay the $290, they kept the dose at 150 mg for $145, but between the Percoset, Singular & potassium pills, I’m putting out $375 a month. Found out that percocet slows down everything in you body, breathing, bowles, everything, that is how those pills work. This is why I take Singulair to open up my airways from the percocet, so sad.

    After reading this, I’m done with Lyrica, will stop to 75mg for a week, then stop taking all together. Will se if they have something else. Be careful with Cymbalta, it worked great for me, but it made me hold water and raise your blood pressure and also made me sweat really bad which made me dehydrated, which caused 15 kidney stones and three surgeries to remove the kidney stones. Plus, I went thru withdrawls for 7 weeks. Best of luck for everybody.

  6. mandy a.
    Middlesbrough
    Reply

    I am currently taking pregablin have been for over a year now I’m on 200mg twice a day I have fibromyalgia and restless leg syndrome. Also very bad depression. I have gained 3 stone since taking this awful drug! My memory is so bad I am very agitated. Really bad mood swings. But I’m frightened of coming of them as I was on gabapentin before pregablin for 5 month and my old doctor took me of them without weening me. I had terrible depression, I was suicidal my mum and fianc√© had to take me to the hospital. I’m scared I may feel that way again.

  7. Wilma
    Northwest
    Reply

    First, a huge thank you to everyone who has shared their experiences with getting off of Lyrica. At my last appt I was given 2 sample packs to “try”. Because of the 70% hike in out of pocket costs since Obamacare went into effect – all part of the “Affordable Care Act”, the first thing I did was search out the cost for the suggested dose, and then with the insurance formulary. It requires special approval AND is only covered at 50%. … around $300 if not approved, $150 if approved, and that’s just the starting off dose. Given the hundreds and hundreds of dollars already marching out every month, I had a problem justifying another $150-$300 regardless of how well it works. Also as I’m sure many have experienced “special approval” can be fleeting. I can only imagine starting to take this and having insurance later pull the approval, leaving me with either a forced withdrawal or $300/mo to keep going and/or however long the weaning process would be.

    After reading what most everyone has gone through with Lyrica, and trying to remove it from their lives, I have made the informed decision to not take a single dose. I opened the sample box to read through their information sheet and will be returning this horrific substance to the doctor. At the last appt they said “you need Lyrica.” I am glad it has worked the miracle for some. However for the rest whose personal lives are crumbling due to the side effects and the withdrawal- I echo the sentiment ‘how did this ever get through the FDA’?

    Another heart felt thank you to those willing to share, you have saved another person from having to go through the same thing . I refuse to “give a try” after my doctors said I “need” it. Thank you.

    • Kim
      Oregon
      Reply

      Hi Wilma,

      I am so glad you made the decision not to even try Lyrica! I have been on it since 2007 and it has always been relatively affordable. I filled my last prescription two days ago and WITH insurance approval, my co-pay went up to $250/month (from $30)! I have no choice but to get off this horrible medication I, at one time, praised. I have begun to take 100 mg from my normal 200 mg the past two days and the withdrawal symptoms are beginning. I had to wean one time before, but not entirely. It is a scary medication and I fear what will become of me in the next few days. Maybe Pfizer will get their way and I will have to cough up the money just so I can function. Consider it a blessing the Lyrica won’t work out for you financially. It stopped helping with my fibromyalgia pain years ago.

    • Angel Peterkin
      PHILLY
      Reply

      Yes, Wilma your one of the lucky ones who were informed so to speak but most were sold the dream as in Docs orders but as usual Help for Some And A Hinderance for the Others

  8. Jess
    Brisbane, Australia
    Reply

    I was recently diagnosed with MS after dealing with muscle spasms, pin and needles and aching pain for years now my neurologist prescribed me Lyrica. As soon as I had my full 24hr dose I started getting agonizing pain in my hands that radiated up my arms. I went to the dr and they said it can’t be the meds. I’ve been on it for a month now gained from 10kgs, have severe insomnia, fatigue, nausea, lack in concentration, no ability to hold a conversation, memory problems, I am agitated all the time for no good reason, moody, irregular periods, unable to produce satisfactory amount of urine, feeling full after fluid, fevers and the list would go on. I have more side effects than I do symptoms from my MS. I have decided to when myself off because I feel so horrible all the time and I’m only 21 yr old with a 21month old son. I just want to feel normal again.

  9. Diana
    Oregon
    Reply

    I started taking Lyrica when I had a compressed nerve in my neck. I found it really helped with my fibromalgia pain too. Thought it was a great pain reliever until, within weeks I was crying for no reason, gained 15 pounds in one month. My eyes are teary and I was so emotional and short tempered. I tried to get off the Lyrica and I sweat all night, pain and no sleep. So I am still weaning. I hope this stops soon. I don’t know how long it takes to get out of my system. As you all know chronic pain is horrible but I don’t think Lyrica is the right answer. Not to mention my doctors didn’t believe me either.

  10. Lisa S
    Ft. Worth, TX
    Reply

    Hello,

    I have been on Lyrica since I was approximately 29 years old (I am now 35). I started taking it after being diagnosed with Fibromyalgia, and was given the maximum dosage of 600mg a day. In addition to being high as a kite, I gained a tremendous amount of weight (about 30 lbs). I took this dosage for several years before attempting a much lower dosage of 300mg a day. I went down to this dosage immediately, without weaning down slowly. I remember the withdrawal symptoms well. I had horrific nightmares, insomnia, headaches, diarrhea, nausea, extreme anxiety, an overall feeling of sadness and depression, but would also experience a wide range of emotions in addition to that, including exaggerated feelings of joy and anger. I also experienced a sudden increase in pain, as well as restless legs, extreme skin sensitivity, itchiness, and a decrease in appetite. Once I became used to the lower dosage, things returned to normal. I have been on this lower dosage since then and have only recently had the desire to increase it because of residual pain due to my Fibromyalgia. I made the mistake of taking more of my prescription instead of simply speaking with my doctor, and ran out early. Luckily, I was able to get a prescription for Gabapentin, but it only helps with the withdrawal symptoms somewhat. I have still experienced much of what I described above, unfortunately, leading me to believe that the Gabapentin is not helping as much as I thought it was. In addition to going through Lyrica withdrawal, I am also coming off of Xanax. I have made a conscious decision to stop taking it because I don’t want to become dependent on it. Well, as you all know, coming off of a benzo cold-turkey is dangerous, and I have had a seizure as a result.
    Although I will completely stop taking Xanax, I will not stop taking Lyrica. Despite the withdrawal symptoms, it is easy to take responsibly when you have the right dosage and is a miracle drug, in my humble opinion. It helps *tremendously* with pain, and I highly recommend it to anyone diagnosed with Fibromyalgia, neuropathic pain, diabetic pain, etc. The key is to take the lowest dose possible that helps with pain, and like with all drugs, it is to be taken responsibly.

  11. Beth
    USA
    Reply

    I took Lyrica for fibromyalgia, I gained over 20 lbs. It didn’t help the pain as much as I thought it would and gaining the weight definitely didn’t help at all.
    I did wean off of Lyrica with the help of a doctor over the period of 6 weeks. I have complicated migraines that are debilitating and take about five days to recuperate from. They leave the left side of my body weak and numb. I have a hard time talking and making sense when this is going on. I wish I had known before I ever started taking it how it could affect me even just getting off of it. I no longer am taking it.
    Recently, the doctor mentioned that I should try Cymbalta, and after reading about the problems with that drug there is no way in Hades I would even take money to try it!!! This experience with Lyrica has been far too painful and scary for my husband, the family and myself.

  12. Steph
    Brisbane AU
    Reply

    Hi,
    About 3 1/2 months ago I woke up with a migraine and have had it ever since. None of the usual migraine medications worked until one day my new doctor prescribed me lyrica. He assured me there were NO withdrawal effects so I was obviously thrilled. I still constantly had the headache and occasional migraine but the pain was so much more bearable! After a month off work I was able to go back, but my memory was terrible, I couldn’t keep track of conversations and I gained 10Kg in a month!
    Finally got in to see a neurologist and he has put me on Deralin, slowly increasing my dose of that while also decreasing my dose of Lyrica. Withdrawals have included nausea, vomiting, headaches (different to the usual one), chills, aches, tingling in fingers and toes and now a late period (not pregnant). As a painkiller, lyrica was amazing but the side effects and now withdrawals are terrible. I have completely finished Lyrica as of 2 days ago and can not wait until it is completely out of my system! Deralin has done the trick and I can now go a couple of hours at a time without headaches.
    Let me know if you have had these symptoms, hopefully by sharing my experience you’ll know you’re not alone!

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