Lyrica. Something to think about

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Lyrica. Something to think about

Post  alli on Tue Aug 03, 2010 6:25 pm

My now former neuro started me on Lyrica about a year ago and besides making me gain 40 lbs, it drastically reduced my ability to handle any kind of heat and humidity causing me to get edema really easily. The edema is what triggered the neuropathy in my feet that I am now having to deal with. So now I have migraines, fibromyalgia, trigeminal neuralgia, and tada! Peripheral neuropathy!!!!

I'm off lyrica now but my GP told me it will be MONTHS before my body recovers from this hell drug and I stop suffering the side effects. And there is no guarantee that the neuropathy will get better.
&$(;/-;()@!!!!

So be very careful if you take lyrica. I tend to get a lot of side effects with drugs so maybe I am an extreme case. It did stop the twitch I had which my gp likened to a form of tourettes so it did help me a bit. However I am positive there are other meds out there that would have done the same without causing another painful condition.

Ah well. Just be careful.
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Re: Lyrica. Something to think about

Post  Guest on Tue Aug 03, 2010 6:49 pm

Very True Alli.

People need to take Lyrica very seriously. It does not work for migraine. It does work for nerve pain.

I gained a boat-load of weight from it, and it also caused severe problems with coordination.

This is a med that causes a lot of side effects for marginal gain. And once you're taken off of it, oooh boy.

Are you going to have a EMG & Nerve Conduction Velocity study done to monitor peripheral problems?

BTW, some elite in the medical field have a considerable concern regarding its side effects. We're not talking doctors from Hickville doctors. They know there's a problem.




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Re: Lyrica. Something to think about

Post  Migrainegirl on Tue Aug 03, 2010 9:19 pm

I also gained a lot of weight on Lyrica -about 30 lbs. And no help with the headaches or neck pain. Luckily I have lost about 20 of it since I quit taking it last year.

The worst side effects were from Topomax and Lamotigrine (lamictal). I got severe nausea(in bed for 2 months) and hyperacusis (sound sensitivity) which I still stuggle with a year later. Then they tried me on Cymbalta which gave me restless leg syndrome. And then Zonisamide which gave me chronic rhinitis - I was suddenly allergic to everything including my husband's shaving cream and the pillows and blankets on my bed! I've now had about every weird side effect in the book and none of them did anything for the migraines.

I'm now using only natural supplements (progesterone, D, iodine, magnesium, and Omega3) for about 5 months now. My chronic daily migraines are much improved(from 80% of days to only 1 or 2 per month) and no side effects. My brother has
started trying this plan also (minus the progesterone) and reports it has helped him as well.
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Re: Lyrica. Something to think about

Post  pen on Wed Aug 04, 2010 4:48 am

My neuro prescribed Lyrica, first time I saw him. For migraine.
I didnt fancy it so didnt take it.

Next appointment8 months later, he ran through the available drugs in convesation, and said.
" Lyrica might help fibro, but doesnt help migraine." affraid

This is the same guy who prescribed Methysergide without even asking me about my kidney function.
I checked it out on line because it sounded scary.....I only have one working kidney....

So I don't have experience of Lyrica, but maybe I am glad.....Sorry you all had problems.

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Re: Lyrica. Something to think about

Post  Anna's Mom on Wed Aug 04, 2010 8:32 am

Anna is having some of the same issues--post Lyrica. She is seeing a lymphodema specialist in October.

Cheryl

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Re: Lyrica. Something to think about

Post  alli on Wed Aug 04, 2010 10:05 am

My Gp was much more aware of the risks associated with Lyrica than my now former neuro and the neuro is the one who prescribed it! The neuro was dismissive of the weight gain and blamed it on Effexor which I had been on a least 4 years with NO weight gain. And when I told her I was having painful spasms in the pudendal nerve, she told me to go see a gastroentronologist. What? For NERVE pain? Aren't you the nerve doctor? Oh.. she doesn't "do" those nerves.

Instead of actually talking to me about my symptoms which would tell you 90% of what a test would, she just dismisses me and tells me she doesn't "need" my diary. hmmm. Here is a fairly detailed account of what I go through every *%(&#(*%!! day and it's not important? I know if I saw her about the pain in my feet, legs, (throw my hands in there too, they burn a lot also, just not as bad) she would tell me to see a podiatrist since she probably doesn't "do" peripheral nerves either.

However my GP... She knew exactly what was going on, gave me a very low dose of Trazodone (which is cheap compared to Lyrica) to help with the pain at night. And gave me the bad news that it is going to take a long time to get over what lyrica did to me. The other doctor just doesn't want to spend the time to deal with a "difficult' case. Which you would think that maybe a docotr might find in intellectually stimulating to help someone with a difficult case, but no.... I think she just want her win page to look good.
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Re: Lyrica. Something to think about

Post  alli on Wed Aug 04, 2010 10:10 am

what is a lymphodema specialist?
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Re: Lyrica. Something to think about

Post  estre004 on Wed Aug 04, 2010 11:19 am

Because of these horror stories and my own with Topamax, I no longer take preventatives. If you can successfully abort your migraines, why put anything else into your body that is so potent. And who knows the long term use of these drugs.

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Re: Lyrica. Something to think about

Post  Anna's Mom on Wed Aug 04, 2010 11:55 am

Alli, here is a link:

http://www.breastcancer.org/tips/lymphedema/managing/

Anna's G.P. said she doesn't have lymphedema. But when Anna saw her P.T. last week (after not seeing her for about two years), she suggested Anna see a lymphedema specialist. I had heard of this doctor via someone's Care Page, and she sounds like an amazing doc.

I told the P.T. what Anna's G.P. said. The P.T. replied that it is edema (full body), and it doesn't really matter if it is lymphedema or edema. When I called for the appointment with this doc, I told them that Anna has edema. That was good enough to get her in (with the PT's recommendation). The person taking the call asked if it was from cancer (no) and asked what was causing the edema (unknown).

She asked about recent imaging, and that made me feel better because I REALLY think Anna needs new imaging of her spine at this point. It has been over three years since her last imaging.

So the good news is that we will be seeing Anna's neuro in Chicago next week, and we have this appointment with this local doctor in October. She is board certified in physical medicine and rehab. She specializes in swelling disorders.

That's the scoop!

Cheryl

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Re: Lyrica. Something to think about

Post  alli on Wed Aug 04, 2010 11:31 pm

The more I read about all this the more depressed I'm becoming. I'm so afraid that the damage to my lower legs and feet might be permanent. Since I'm still swelling the damage is ongoing. I already hurt in so many places adding another one is just so darn demoralizing.

I'm not taking anymore "new" drugs until they have a ten year track record. I bet in the next ten years the warnings on lyrics will be a lot different and anyone taking it should be monitored closely for dangerous side effects.

I hope that Anna has good luck with the new doctor. Is she just having edema or is she getting neuropathy also? I really hope that she doesn't have to deal with that also.
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Re: Lyrica. Something to think about

Post  Paradox on Thu Aug 05, 2010 1:07 am

Wow! I'm with estree on this one! Scary. I gave up on preventatives also after a bad topamax experience and was just dipping my toe back in the water with some old school tricyclics (but had side effects).

Thanks for sharing your experiences Marc and Alli. I don't think this is something I should ever try...
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Re: Lyrica. Something to think about

Post  pen on Thu Aug 05, 2010 4:26 am

Linda and I have had similar migraine patterns and similar views. We both gave up on preventatives, and the next one I take will be a migraine drug, rigorously tested. She does better than mine because her abortive works really well. My Triptans work but bit hit and miss.

So that makes 3 of us. And by the way, I read the other day that 14 months is the tops for a preventative to work but 6/8 months is the average. (Cant find the link...damn it). So then its on to another one.....

Lyrica and Deseril were a bridge too far for me...

Pen

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Re: Lyrica. Something to think about

Post  HeelerLady on Thu Aug 05, 2010 7:49 am

pen wrote: And by the way, I read the other day that 14 months is the tops for a preventative to work but 6/8 months is the average. (Cant find the link...damn it). So then its on to another one.....

Pen

Just one more thing your doctor doesn't tell you when starting guinea pig trials. Rather sad that they aren't upfront with us on what a "preventative" is and what to expect. I'm with Pen and Estree on the preventative thing. I will not take things that have not been thoroughly tested and the side-effects have proven not to be worth the hassle as I get every stinking one....
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Re: Lyrica. Something to think about

Post  Anna's Mom on Thu Aug 05, 2010 8:39 am

Alli, she has burning pain in her head, spine, legs and feet. We don't know what it is--it hasn't been diagnosed yet.

She started feeling this burning pain when she went off Cymbalta. She was on Cymbalta for two years. I don't know how long she was on Lyrica nor when she went off it (haven't checked). Maybe she was on it for one year and went off it last spring.

The doctors' theory is that Cymbalta was covering up the burning pain. But Cymbalta was more than likely making her head pain worse, and it had other side effects--so both good and bad with Cymbalta.

I don't know if Lyrica caused the burning pain, but I don't think she should ever take either med again.

Cheryl
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Re: Lyrica. Something to think about

Post  alli on Fri Aug 06, 2010 2:25 pm

I'm not postive how much pain was being "treated " with Lyrica, but once I started getting edema it certainly broke through. Now that I'm not taking it, the pain is a lot higher. I really blame a lot of this in the edema. That is a LOT of pressure being put on your nerves when you are retaining a lot of fluid.

I hope Anna gets some answers soon. I wouldn't wish this on my worst enemy. Burning stabbing aching pain that just won't stop is debilliatating and much too frustrating.
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Re: Lyrica. Something to think about

Post  alli on Sat Aug 07, 2010 12:33 am

Marc. I'm not sure what tests the new neuro is going to order. But I expect that a nerve conducting is going to be one of them. Depnding on how things feel when I see him if he doesn't order one I may ask for one.
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Re: Lyrica. Something to think about

Post  Guest on Sat Aug 07, 2010 12:59 am

Alli, if this is what the doc feels is the proper diagnosis, I'd want a test that could measure it...

Especially to document current condition to compare against future changes.

EMG + Nerve Conduction Velocity studies. It's a bit expensive, but insurance should cover it. If the doc is bsing you, you'll find out via EMG studies. It is a bit painful, but nothing horrible.

I've had 3 studies, and it has come in extremely handy to diagnose the CNS over time.

If anyone is going to make a subjective diagnosis, then one shouldn't have problems with ordering this test--it will only back-up their findings.

I had my 3rd EMG a month ago and had some not so happy findings. They need to be correlated and confirmed. Not fun but necessary.

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Re: Lyrica. Something to think about

Post  susanasophia on Sat Aug 07, 2010 11:54 am

i love lyrica
it helps with my anxiety and headaches. its been wonderful.
it has made me gain weight though.
im joining jenny craig.
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Re: Lyrica. Something to think about

Post  VickiG on Mon Aug 09, 2010 9:53 am

Lyrica has helped my mom's fibromyalgia. Plus, she has had the added benefit that it has helped her depression too! When she saw her psychiatrist, she commented that her depression seemed to be getting better, and she found out that lyrica can have anti-depressant functions. She is very happy with her lyrica.

Now that the DEA is requiring all scheduled prescriptions to be written on a secure prescription instead of being allowed to be entered into the computer system that is connected with the pharmacy, we've become much more aware of which drugs are scheduled drugs, and lyrica is one of them! Being a scheduled drug means that it has addictive qualities. Lyrica is a schedule 5 drug, which is the lowest schedule, and the reason it is scheduled is that rats have a tendency to like it!

Another scheduled drug that my doctor laughs at is lomotil, a diarhhea medicine. We have no idea why that would be addictive!
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Re: Lyrica. Something to think about

Post  alli on Mon Aug 09, 2010 10:18 am

I'm glad that Lyrica works for some people. I thnk I am just one of those people who is particularily prone to side effects.

I seem to get the worst ones. I really think that weigt gain is something to be looked at seriously with these kinds of drugs. Looking back on the past few months I think the edema was affecting me long before I went to Texas but I didn't notice it. I thought I was just putting on weight. But I was bloating every day. I can remember my abdomen getting bigger as the day wore on. I think that rapid weight gain and edema go hand in hand.

My doctor should have taken my complaints seriously and checked me for edema. I think a quick physical exam would have done that. Then maybe I'd have been advised to sto taking it before it affected my lymphatic system to the extent it has.

I wish that side effects, especially the scary ones would be watched more vigilantly. I'm in a lot of pain today and feeling a bit bitter about life. Sad

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Re: Lyrica. Something to think about

Post  Paradox on Mon Aug 09, 2010 10:56 am

When I realized I lost two years of my life as the result of side effects and over prescribing quacks I get so, so angry. I try not to dwell on it, but at times, especially if someone who hasn't seen me for awhile comments on how good I look, that anger comes back to the surface.
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More sites about Lyrica side effects

Post  lyricasurvivor2 on Wed Aug 18, 2010 3:06 pm

Hi, several people are trying to join together on Facebook; the page is called Lyrica Survivors. Here is a bit about it: This group was created in order to bring together all people who have had severe side effects from Lyrica (made by Pfizer). Often the effects are catastrophic & last even after the drug is no longer in a person's system. We need to come together & bring awareness of the devestation this drug is causing in people's lives. Many of these side effects are NOT listed by the drug company. Here is a place where you can find others like you, or your family members, that have had their lives shattered by Lyrica. Some of us have been trying to band together to sue Pfizer for product liability.

I started at a site interested in pursuing a lawsuit against Pfizer & found a host of side effects I had no idea were out there. That website is: http://www.prescriptiondrug-info.com/threads/lyrica-lawsuit-D77155_s2.htm

I won't retell my story here, but there are more of us than we think! I hope some of this info might be useful...
Cheers!
Amy

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Re: Lyrica. Something to think about

Post  estre004 on Thu Aug 19, 2010 7:06 am

Pen - so if preventatives are only good for 6-8 months and it takes 3 months for them to work, that is a lot of drug for temporary relief for "some" of your migraines. My neuro said most preventatives even if they work just reduce the number of them. I am giving the amitriptiline a try. even tough I said I was done with preventatives. I will only stay on this dose if there are no side effects and they reduce my migraines by half. Otherwise, forget it. I'll just take my abortives.

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Re: Lyrica. Something to think about

Post  alli on Thu Aug 19, 2010 10:04 am

I can't find the Facebook page for Lyrica Survivors. Could you post the link?

Thanks.
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