Lyrica Side Effects After Long Use

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Texas Cowgirl Says:


I have taken Lyrica for over three years for serious Neuropathies (Level 10 pain...unable to leave my home or function at all) caused by undiagnosed B-12 and Vitamin D Deficiencies. I started at 150 mg twice a day; however, had to increase to three times a day to more fully deal with the pain. Eventually I reduced it back to twice a day as the pain was controlled (90%) and due to excessive daytime sleepiness. Lyrica saved my life. I am able to work full-time again and do. Most side effects disappeared over time EXCEPT losing word recall at times and weight gain (I diet all the time now). But it is ALL worth it to be nearly pain free... Nerve pain is unbearable. I am a 68-year-old woman and healthy otherwise.



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Verwon Says:

I'm so very glad that this medication is working so well for you.

The memory issue is a normal side effect that some people experience with these anticonvulsants, it's just due to the way they work on brain chemicals. Other side effects, as listed by the FDA, may possibly include mood swings and dry mouth.

Has anyone else had such good results from taking it?

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Kitty Says:

Like you, I was finally prescribed Lyrica for nerve pain associated w cervical ( neck) stenosis (cord compression) and lumbar stenosis, a very, very painful incurable condition. Like you, I was unable to work or function, and was in bed half my life suffering w unbearable pain, using a TENS unit, opiates and Colpacs w little relief. I was on a mission for nearly 2 yrs trying acupuncture, numerous rounds of physical therapy, massage, steroid injections, to no avail, until referred by my neurosurgeon to a physiatrist ( sometimes called a pain doc, or physical med doc) who prescribed Lyrica and Cymbalta which was like a miracle. Suddenly I had my life back, I could function again! (Although not pain free.) since my condition is progressive, it was only a year before I required non- elective triple level laminectomy. Again, wondrous pain relief and improved balance, coordination, movement in general., more agile & sure footed. As another yr passed, I'm losing some of that agility and sure-footed ness and have to take my husban's hand to get out of car seat, hol onto railings, etc. Is that a side effect of long term (3 yrs) use of Lyrica?
Recently my vision has changed rapidly and I can't read my cell, food label I gradients, so I bought a lighted magnifying glass. Is this "vision problems" due to Lyrica?
Also, I've had IBS for yrs, but it is worse, and my feet hurt. I do excercises for my feet daily. Is this also Lyrica?
Any answers would be greatly appreciated. Thank you, Kitty

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Kitty Says:

Texas Cowgirl, you are the one I was looking for earlier when I posted about my long term Lyrica use & side effects as they occur later, over time, not the initial reaction such as extreme sleepiness & balance issues.

Look for my post today entitled "Lyrica long term use, side effects," and I am not the only "Kitty." I say this b/c I get notifications of my "most recent post" which is not accurate.

I have been on Lyrica together w/ Cymbalta for over 2 yrs. It has been very helpful.
I too was discovered to have Vit D3 & B-12 defiencies by a blood test ordered by my Gyn, treating me for estrogen deficiency ( actual long term deficiency, not post menopausal normal lower values.)

Can you read my earlier post, and can you off any info about why your Drs thought the Vit deficiencies CAUSED your neuropathy? ( my understanding is that neuropathy is caused by untreated, out of control, extended pain, usually b/ c Drs are unwilling to prescribe pain meds b/c they are more afraid of causing addiction.)

Thank you for sharing any info you may have to offer.

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Texas Cowgirl Says:

That is complicated. My first symptom was actually 2 years of nausea and a loss of 30 lbs. My Internist said I had an immune system disorder. Due to the nausea I went to a gastroenterologist who told me after dozens of tests that there was nothing wrong with my my GI tract. So I went home and didn't know what to do. Then the pain started, and I could no longer work. So I went to a Rheumotologist to see if I had an immune system disorder. She listened to me for two hours and ordered only three blood tests, which showed I had no immune system disorder, but I had extreme vitamin D and B12 deficiencies. Within one week of B12 shots my nausea went away. She also prescribed Lyrica and most of the pain went away. She added Cymbata to boost its effectiveness. How does she know the B12 and or Vitamin D caused the neuropathy? We don't know 100%; however, my doctor is convinced of it. The concept has been supported in medical literature and research. Particular the B12, which supports nerve growth. My pain lessened over time on the B12 then plateaued, which is why I'm still on Lyrica/Cymbalta but a lower dose. Hope this helps.

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Texas Cowgirl Says:

Sorry for your new symptoms. I have had no vision problems, balance, or IBS symptoms, while on Lyrica (4+ years). Hope this helps.

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Kitty Says:

Yes, thank you, Lyrica has been nothing short of a miracle, but after 2-3 yrs, other side effects besides the very disturbing "big belly" (40#) & weight gain (10" to my waist & new wardrobe).
Memory issues are stressful and difficult at times, but it is not getting worse and is fairly minor. It is only noticed by my husband and people close to me.
Inciontinence is a whole other matter. That's very difficult to live with. And where will this lead, a catheter and urine collection bag? Hope not.

Q1: Can you ask your prescribing doctor why the diagnosis and why determine the "cause" as D3 & B-12 deficiency? You know, don't you, that neuropathy is caused by too much pain, untreated, uncontrolled, long term, or repetitive pain, usually incurred by an injury at the start. Neuropathy seems the same as fibromyalgia in this regard, although I'm not sure every doctor has become enlightened regarding these facts.

Q2: What is your doctor's specialty? PC, neurologist, physiatrist?
Thanks so much for your reply.

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Treci Says:

I have severe Fibromyalgia. I too am alive because of Lyrica. I take 75 mg three times and the side effects of low blood pressure, dry eyes and constipation. I need to day but need increase to 100 mg for better pain control. When I've tried 100 mg three times/day, I have more dizziness than is safe for driving. I wonder if that side effect would go away if I increased to 100 and stayed home a week?? Any replies?

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8
Rusty Says:

Treci, I had wonderful success at first with Lyrica. I had already been taking Cymbalta and not getting enough relief. I believe I was at 150 mg at night and 150 mg in the morning. I say wonderful because I felt so good mentally for the first time in a couple of years. It was not only the pain was lessened, but my attitude was so great! I felt like my old self that I could do anything and actually thought I could get back to my work full force. I would joke that the Lyrica was one heck of a antidepressant. However, as time went on I started getting what my friends and family said was like a personality change. I came on very strong and would argue a point to death. I don't really think I was different, but that my former CEO personality was coming out and it didn't really fit my current life. Also the sleepiness become so bad that at 10:00 in the morning I had trouble driving home from the store. My memory was also getting very foggy. I had difficulty remembering facts and preparing documents that were part of my work for the past 20 years. In addition, I realized that I felt good with pain if I lead a stay at home life not doing too much. If I was very active, working, teaching, cleaning, cooking big meals, anything that required me to be on my feet for extended periods and be alert and give a normal work day, I was in a lot of pain and had to supplement with the Hydrocodone. I finally this past summer made the decision to go off both the Lyrica and the Cymbalta. It was bit difficult, especially as the scheduling with my doctor didn't work out well and also because the decided to try the Suboxin? next which meant 2 weeks with no pain meds. The Suboxin was a nightmare and I was one of the 2-3 people out of 500 that my doctor said can not tolerate the metalic taste of this. I was vomiting for 3 days and ended up in the ER needing 2 bags of saline and one of glucose. I could not get any food down for weeks other than plain crackers and chicken noodle soup...you guessed it....the good news is I lost over 20 lbs in less that 3 weeks. All of this weight came from 1 and 1/2 years on antibiotic from the MRSA I caught from extensive back surgery (which required 2 more back surgeries to get all the MRSA out) and the weight from the LYRCA. I have only gained back 2-3 lbs over the 5 months since and I work very hard to maintain the weight. I lost the weight by pain (the weeks with no meds and the weeks of severe nausea from the Suboxin)...what a terrible diet plan. I have been on the Fentanyl patch 25 mcg/h and the Hydrocodone for pain (when I am normally active, more if I am traveling). I don't really feel the Fentanyl is adequate but I don't feel up to trying a stronger dose. I know that if I get a sleep a solid 8-9 hours (used to function on 6 hrs when I worked full time) and I go work out - strength training 3X a week and cardio 3X a week, I am ok. When I have to be much more active I have to take the narco 2-3 times a day also. I had hoped to have my life back and maybe one day I will but for now I just hope to walk on my own.

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9
Kitty Says:

Texas Cowgirl, yes it helps to hear about your experiences, and thanks for sharing.
Now that I've been on D3 & B12 for 6mos, I'm having improvement in a reduced level of pain, numbness & heat, tingling etc, so I became brave and have tried cutting down on my dosage of Lyrica. I once had been at 4x 75mg daily, then down to 3x 75mg. daily. I was motivated by the unpleasant side effect of incontinence I developed, serious incontinence. I was using 3 incontinence pads a day. I visited my PC, about this and worsening IBS. It's the Holidays, so my appointment is sev'l wks away for GYN/urology. My past: I had full on incontinence from spinal compression which led to non-elective surgery, which relieved a great deal of pain as well as incontinence. I later developed stress incontinence ( small am't of leakage w cough, laughing hard, or a sneeze, not uncommon) from estrogen deficiency. I saw a GYN who prescribed estrogen patch (for this & a host of other estrogen deficiency symptoms) which was effective. Now over a yr later, I'm facing very uncomfortable levels of incontinence, just regularly occurring dribbling & leakage w/o a cough or sneeze. I read here that it could be a side effect of lyrica. I'm inclined to agree. Worrisome. I also am very unhappy about the 40 lb weight gain and big belly I'm helpless to do anything about. So I cut back to 2x 75 mg daily. I didn't think this would be possible due to the unbearable nerve pain, and I was told by my Drs nerve damage is irreversible. Anyways, cutting back to 2 pills reduced my incontinence to 1/4 of what it had been on 3 pills daily, and my weight went down 2 lbs. Neuropathy is irreversible. I'm supposed to stay on lyrica lifelong.
How can this be?
I'm planning to eventually stop taking it, hope my weight returns to former weight, that the incontinence goes away, but I read here that the "word searching" doesn't ever leave you. That's essentially brain damage. It affects my speech by creating pauses while I struggle to reach for a word I know I should know, breaks up my fluidity of speech, I'm less articulate, and speech is somewhat hesitant, or even broken up, which leads to insecurity in speaking. I always took pride in the fact that many people in my lifetime have told me that I'm quite articulate. It's also difficult to continue building my vocabulary, which normally, we do throughout life.

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Hk Says:
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What do you have on the side effect of small blood veins leaking blood which causes toes , feet , ankles turning black and is increasing upward . Why does Lyrica do this? It is ugly looking and skin is painful to touch . What kind of doctor can treat this side effect? It hurts to even walk. I want to know how many people has reported these side effect to you and for how long?

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11
Kitty Says:

Hi Hk, I don't know if you meant to address your comments to a particular post or to a specific person, but I'm replying b/c your report of bleeding or leakage of blood under the skin piqued my interest, as I had a similar problem on my hands. I was continually causing deep, dark purplish "bruises" which looked like splotches. Every time I bumped my hand during the course of any ordinary day, doing simple ordinary activities. Like getting a pot or a dish out of the cupboard, or opening a drawer and bumping the top of my hand on the drawer opening, little knicks and bumps that should not bruise me or leave any kind of mark or injury. And it hurt, and would smart and sting. No matter how I tried I could not avoid getting them. They always looked so ugly and could easily be taken to be a skin abnormality such as a birthmark. Even my manicurist didn't really get that the splotches were always only on the top of my hands, and the position & color always changing from one appointment to the next. I asked doctors what could cause it; no one had an answer. Finally, I "caused" a particularly nasty one when I was crushing cardboard boxes & tying up a big bundle w/twine. I watched it spread as it bubbled up under the surface of my skin. Long story short, in 10 hrs I had a blood clot, a (DVT) but didn't yet know it. My arm was in pain, it was swollen, I couldn't drive, but I didn't want to go to the ER. I assumed it was more of the radiculopathy I regularly suffered from spinal stenosis. It was Friday. Mon am I got in to see my PC, landed up on coumadin for 6 mos. Ultrasound revealed it had travelled to under my arm (axillary) and the Cardiovascular doc I saw weeks later as F/U, said it was most definitely caused by the injury to my hand, that the threat was pulmonary embolism and I really should have gone to the ER, and said they would have dissolved the clot via thrombolysis. Wow, I did not know what a serious problem this was- I could have died. Months later, a blood test ordered by my Gyn revealed B12 & D3 deficiency which I began taking immediately. In a few weeks, the "bruising" problem disappeared -completely disappeared! Who knew??? So, the upshot is, the bleeding/bruising is not just unattractive, it's seriously dangerous. My 2nd point: it might not be caused by lyrica. I recommend getting a blood test, and follow your doctor's advice on the specific form of supplement(s), if that is the finding. Sometimes B12 is given by initial inj., or you may be advised to take a sublingual form, as I do, etc. Well wishes, and I hope you find your answer.

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Traci Says:
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I am 64. Was one who started this discussion about long term effects of Lyrica. I wish I could tell my family and acquaintances that I am still the person they used to like. And that I've just had a personality change and memory changes due to Lytica but still need their love and contact. Everyone except my mother and husband ignore me, never call, never text. It sure is lonely and depressing. It teaches us to do unto others as we would have them do to us. Call shut-ins, call and/or write notes to those who are sick or in pain.

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chaboo Says:
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Verwon, what exactly is your connection to lyrica? Every so often you pop up in a thread and make a statement about "normal side effects", as you call memory loss for example (a side effect that is NEVER rectified after ceasing this medication), or you ask if anyone other than a minimal few have had good results on lyrica.

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14
Traci Says:

I want to share the following with all of you and hope you will share with other Fibromyalgia folks:

Please watch "New Insights, New Directions" by Dr Patrick Wood. Part I, 2 and 3
Each one is about 13 minutes. He explains the results of 3 different brain MRI's on Fibromyalgia group and non-Fibromyalgia group. Please return to this blog and give feedback. Thank you all!

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Jill Says:
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Re: Kitty (# 11)

Kitty, have you been able to stop taking Lyrica yet? If yes, did you taper or how did you get off. Either way, how are you doing now. I'm tapering now. I've been on 4 years. It probably started poisoning me 1-2 years in I'm guessing...

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EQuinox Says:
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I have been diagnosed with severe spinal stenosis. I take Lyrica 50mg with Naproxen in the morning and in the evening. I have severe tingling numbing pain after sleeping. It's so hard to move my legs. My question is, is this a side effect from Lyrica or is it the stenosis?

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