Lyrica - Taking ownership of my health
 

After years of undiagnosed pain, I was relieved to actually have a diagnosis. Though no one (i think?) would wish ill health on others or themselves, it was a relief to end up in rheumotology after months in neurology and to get some answers. However....And here's the clencher....the solution to the intense pain was to take Lyrica. Very high in cost and co-pays even out of reach I utilized the pfizer connect to care program and was able to acquire what I thought would be the answer to my symptoms. In the beginning, the Dr had me on the low doses, like most people would likely be advised. Within six months I had "worked up to" 450mg and still experiencing "break through" pain. Within a year, it was 600mg, over 65 pounds gained (which limited my mobility even further) all the while managing the "break through"pain with light narcotics and voltaren gel. After consulting with my PCP and another Rheumologist....we all agreed it made sense to stop a medication if it is not working. Why put it in my body and still have to manage the pain otherwise. UNDER CAREFUL GUIDANCE BY PHYSICIAN I am weaning off. Side effects are horrible and harsh. Swelling indescribable in hands and feet. Now I am finally down to alternating 150/300 mg a day. I think I can handle a faster pace, but will consult before doing so, with my rheumo. USE CAUTION with Lyrica. I am using Voltaren gel in the pain points, getting medically supervised exercise at the hospital and using warm water swimming and exercise programs along with other slow movement instruction/stretching like yoga, etc. Its not perfect and I am back to square one pain wise but feeling empowered at the same time.

I was on Lyrica for about 10 days last year. Nasty nasty nasty nasty nasty nasty nasty nasty stuff!! (did I mention that it was nasty?)

My feet, legs and hands swelled up like crazy, and I was so stoned from it all the time, and it wasnt even a huge dose. (neuro gave me sample bottles...whatever dosage that was)

Because of the swelling in pretty much my entire body, my regular doctor sent me to get an echocardiogram to make sure the stuff didnt hurt my heart. (it might have...cant remember what it was called, but they found something weird there...)

I quit Lyrica cold turkey. That was not a fun week or three. Sucked actually.

So, I cant take Lyrica or Neurontin (both are similar drugs) they both make my body swell up like crazy. Plus, I read that it was dental destructive. I like my teeth the way they are. Another good reason to not take it.

My MD keeps saying "look we have all of these wonderful drugs at YOUR disposal and you WONT take them??!!, why??" and then I point out all my MS friends who have already taken them, got nowhere with them, and then took months to wean off of them. I will take the zanaflex or baclofen "as needed" but I refuse to take it on a regular basis. I will take my xanax "as needed" I dont feel I need to stay on it everyday all day.

Yes, I know this disease can and will march forward on me, but until that days comes I am going to be as drug free as I can be.

Thank you for taking a moment to post your experience, it helps to know what others have tried and expeirenced. I find that doctor's are very influenced by certain drug company and reps. I have seen it first hand, they will buy the office tv's or lunch, computers, etc. So it seems our system is tilted toward pushing some drugs and not so much the plain old ones used for years. I started counting and right now I am taking about 17 pills a day. That's nuts...and they (PCP and Rheumy)are trying to get me to take Enbrel...for my arthritis which is NOT good for people with MS like problems..per my neurologist. I see my Nuero on Tuesday and I plan on asking which drugs to keep and which to give up...My primary told me they have drugs that can halt MS? Is he reading something I am not? Everything I read says you can slow it down, but no cure.

I dont think my neuro was giving me Lyrica because any drug company was pushing him to. I think he was trying to help me find relief.

When I took some of the stabby drugs (copaxone) a few years back, he let me decide on my own which drug to take, and when I decided I didnt want to do it any more, he had no problems with it. (he said during one visit that he didnt think any of the stabby drugs worked, and that kind of killed any confidence that I had in it)

When I told him the experience I was having with the Lyrica, he told me to throw it away. He doesnt seem to have any problems with me making my own decisions on what to take and when. Only drugs that I take for my MS now is just the occasional baclofen and valium. Which I dont take all the time. Maybe a couple of times a month I'll need a baclofen.

My orthopedic doc tried to put me on Lyrica for the nerve issue I am having in my neck. After reading the side effects list, and seeing that it had a reaction with a med I am already taking, I spoke to my primary care doc, and we mutually decided it was not a good idea to take it.

:circlelove:(((((Jossy))))):circlelove:

I couldn't breathe on the stuff. Felt like an elephant was sitting on my chest

I did notlike lyrica, and my body did not either.. side effects.. but for my nerve pain.. I take Gabapentin ( neurontin) and have not had to increase my dosage and on for few years.. the dosage I am on keeps the nerve pain at bay... now for spasm pain neck and back... no such luck.. but working on it with PT.. etc... no dx here but working on that slowly too.. hugss

Wow. I knew Lyrica had downsides, but I had no clue it was that bad. :( When I was diagnosed with Fibromyalgia over the summer, I asked my rhuematologist what I could do for the pain. He told me there was nothing. I could either fight through the pain and have a life, or lay in bed and have no life. I was curious about Lyrica and when I asked he told me I would end up with more side effects than relief. I still don't care for the first half of his answer, but I'm definitely glad he didn't put me on Lyrica.

I wonder if anyone has had good results with Lyrica? The commercials for it come on all the time and the list of possible side effects is longer than the list of benefits. :rolleyes: I see the ad at least three times a day on TV. Maybe sales are so poor they're trying to advertise it more?

I love lyrica! I has been life changing for my spinal pain

Lyrica Has Seriously Impaired My Mind And Damaged My Parotid Gland.
 

Lyrica Has Seriously Impaired My Mind And Damaged My Parotid Gland.

After only 2 and 1/2 weeks on it (for neurogenic pain from spine injuries lumbar spine and cervical spine):



First day after taking it, "buzzing electrical nerve symptoms" some better, but pain was still there.

Dizzy, stumbling... Dizziness decreased after a few days (never stopped, always present when first arising from sleep). During those 2 and 1/2 weeks that I took Lyrica, I gained 10 lbs, had extreme dry mouth, got tangled up/"lost" in my clothes when dressing, tangled in my seat belt when getting in and out of car and tangled in my purse straps ... all the time...

Was (still am) constantly reversing words (I say "up" instead of "down," "high" instead of "low," etc.), couldn't hold train of thought (still can't), difficulty completing simple tasks in logical way (still difficult), was way too "mellow" for my own good, swollen face, fluid retention (pitting edema), blurry vision, mouth burned inside.

Last Straw: Add lips buzzing and tongue turned white and swelled to size of a giant bar of soap... Doc put me on massive Benadryl, and if swelling didn't go down in 2 hours, I was to get myself to an ER. Swelling went down... 



The extreme, prolonged dry mouth from Lyrica caused my right side parotid gland (saliva gland) to clog up/stop functioning, now causing excruciating pain every time I take my first sip of liquid or bite of food. (Dry mouth resulting still persists.) Doc's film/contrast fluid injection study showed it had lost most of it's "branches." They were "gone." It is now essentially "dead" as far as producing saliva goes, but not dead enough to keep me from wincing in pain with every first sip/bite.

Lyrica works for some (so they think? So I've heard??) but the few people I know who take it either: A - Are retired and don't do much but stay at home. B - They are former "stay at home moms" whose children have grown up and left home and now they don't do much. C - They don't have (or have never had) jobs. D - Their lifestyles are not demanding (do not demand that they function to a high degree, mentally). E. Live lives of leisure wherein "mellow" and "going to lunch" is fine. etc.

Perhaps there are fully-functioning folks out there whose lives are not impacted adversely by taking Lyrica, and I am happy for you. 

I wish Lyrica had been a "magic bullet" for me, because I need one or two, but, it was hellish. It still is. 



I took it for 2 and 1/2 weeks in March 2011. It is November, 2011 - 8 months later and mentally a wreck. The physiatrist who had prescribed it to said these effects would soon pass. They have not. have extreme short-term memory problems. Hard to do my job at work and hard to live my life at home. "Snow Globe Brain," or, "Etch-A-Sketch Brain." I start to do something, turn around, and instantly forget what I was about to do... Constantly. (I kept up with it yesterday morning, and during 1 hour, I had forgotten what I was doing over 20 times {I forgot to write it down a few times}. Frightening.



It all started with Lyrica. 



It is difficult to type this. I keep reversing letters in words and am having to edit constantly. 

It is hellish to be half the person, mentally, that I was prior to taking Lyrica!

What can I do????? 

Has anyone recovered from any Lyrica side effects???

Meanwhile, I am declining in function from the spine injuries.

So, not only neurogenic pain/body function decreasing in upper and lower body. Add to those problems, thanks to Lyrica - I now have also lost some of my mental functions.

Lyrica is the only drug that has stopped my daughters' seziures. Not saying there were some drawbacks but she consistently had seizures until she tried Lyrica. The last one she fell just outside a store, hit the curb and busted her head. No insurance but was hospitalised anuway. They wanted to x-ray her neck, really wanted her to do that so of course she does have some problems from that still. And oh yes, the weight gain, she really has to work out and watch for that, but is doing a great job of it. She also has fibromyalgia and a lot of baack pain but I can't say that it does all that much for that. If might but really wish something would do more. But thank Heavens about no seizures.