Are you interested in taking Lyrica?
July 10, 2007 by laura
Filed under Diseases & Conditions
Originally, I wasn’t going to write about the developments of the nerve pain drug Lyrica. I don’t find much interest in drug developments. I view treatments that surround a regime based on pills with a skeptical eye (at best). In my experience, it hindered my progress…not helped it.
However, this is not the case for everyone. Lyrica is no longer breaking news….people have been talking about its use for Fibromyalgia patients for weeks now. It is still news though, and so I will report it. Just not throwing my support behind it.
On June 21, 2007 the FDA approved Lyrica as the first drug treatment for Fibromyalgia. Let me say, that Lyrica is not a cure, although it might ease some symptoms. It is already approved by the FDA for the treatment of nerve pain caused by shingles and by diabetes. The drug is also known to reduce some forms of epileptic seizures.
According to Steven Galson, MD of the FDA
Today’s new approval marks an important advance, and provides a reason for optimism for the many patients who will receive pain relief with Lyrica. However, consumers should understand that some patients did not experience benefit in clinical trials. We still have more progress to make for treatment of this disorder
The clinical trials that Dr Galson are referring, consisted of two trials of about 18 000 fibromyalgia patients. The trials backed Lyrica’s use in treating fibromyalgia at doses of 300 milligrams or 450 milligrams per day, according to the FDA.
As with any drug, side effects will be present when you take Lyrica. Here is a list of what you might experience, when you start on this regime: dizziness, sleepiness, blurred vision, weight gain, dry mouth, swelling of the hands and feet, impaired motor function, and problems with concentration and attention.
You all know how I feel about this kind of treatment. While I try to keep an open mind about developments such as this, I find that a passive approach (ie pill taking) is definitely not for me. Of course, I may be alone in thinking this way. I am ok with that. If you have had a good experience with meds such as Lyrica (or some other one), I want to know about it. Or if you have a difference of opinion, please share it. Different opinions help my views to become broader….and that is a good thing.
I love my Lyrica (I take 300mg a day in equal doses, for Fibromyalgia).
It doesn’t eliminate the pain by any means, and does nothing for my sleep, but what it does do is make it a lot easier for me to “tune down” the nerve-pain spikes, and makes relaxation techniques like hypnosis possible.
Great!
This is the stuff I want to know.
I am glad to know its working for you….especially when I know you are using it with a combination of what I like to call a “natural” technique.
You have already made me feel a bit better about it.
Thanks for sharing!!!
I don’t love my Lyrica, but I don’t hate it either. It’s certainly not the ‘miracle pill’ I personally would love to have (passive or not, to be able to have a painfree day would be worth millions to me), but it does dial the pain down a notch (from a 9 out of 10 to an 8 or 7.5 out of 10) and it’s the first thing that has, for me. That ‘weight gain’ side effect they mention, though? Um.. Yeah. That’s my biggest (ha!) downside with it.
I was prescribed Lyrica last year as a preventative for my chronic headaches, and since I have CFS/FMS, I was hopeful it would help.
While it helped a little with sleep, it did nothing for my other symptoms. In addition, when I had to taper off (we thought I was having a reaction to it), I had horrible withdrawal symptoms that caused long-term insomnia and panic/anxiety disorder. I firmly believe that Lyrica caused some permanent damage.
I’m glad it helps some people, but I think doctors push too many drugs without truly understanding the consequences.
I did blog about my experiences–and I do get plenty of hits from people searching for “Lyrica Withdrawal”
NTe,
so its helping slightly on the pain management side…with a bad side effect.
Is it worth it, to you. A 10 pain down to an 8 pain doesn’t seem like a huge difference. But of course, this is not about me. Other than a miracle pill, what would make this a better experience for you?
Angel,
you bring up an interesting point. Withdrawal. That was a question, I wanted to bring up. Just how easy is it to get off Lyrica, once you are ready to do so. Doesn’t sound easy at all…in fact it sounds down right nasty.
Withdrawal is always a question I ask my doctor or pharmacist when talking about a new treatment….its where I do most of my veto-ing!
Thanks for sharing.
Re:Lyrica
Anyone suffering from chronic neuropathic pain will have exhausted every possible (natural/medication) option for pain control. Neuropathic pain does not response to traditional medications, nor does it respond well to natural or hollistic methods of interventions. Lyrica was prescribed to be subsequent to multiple cervical disc herniations which resulted in spinal cord disruption. This resulted in severe neuropathic pain which was excruciating. The most common pain felt was the feeling of being scalded. My pharmacist suggested I try Lyrica, and my doctor agreed. The reduction in neuropathic symptoms has been significant. At times, there is no pain at all. In my opinion, Lyrica was first and foremost designed to treat neuropathic pain and that it what it works best for. Unfortunately, I think the drug gets prescribed as a cure all for all kinds of ailments and conditions it was never meant to treat. Therefore, if you experience pain which is non neuropathic in nature, you may have little or no success with this particular medication. For example, I have a difficult time understanding how and why it would be prescribed for headaches. Anyway, those are my thoughts. And for those of you experiencing neuropathic pain (whether organic or trauma related), try it!
Suzanne,
I am glad to hear that Lyrica is working for you. That is good news….considering the mixed reviews I have heard about it, so far.
My opinions about pain management, are quite different from yours…but I am pleased to know that you are finding some relief from this drug.
Good luck with your treatment.
Lyrica Withdrawal… I have been on Lyrica 300mg per day for over 18 months for a persistent pain state. I decided to come off it and tappered my doses very carefully over many weeks. The withdrawal has been awful!!! Headaches, feeling and looking agitated and unwell, insomnia, night sweats, nausea, and difficulties with thinking, concentration and attention. If you are on this drug too long be careful coming off it. I have been withdrawing for over four weeks and there seems no end in sight yet.
David, thanks for sharing!
Your withdrawal symptoms sound awful.
What made you decide to stop taking Lyrica in the first place?
I hope you can find relief from the withdrawal symptoms….FAST!!!!
Thanks… But i doubt it… I will just have to wait until they go away.
I stopped taking it because i felt 18 months wa enough. I was also getting sluggish, putting weight and generally feeling i ought to try the world again without it.
Since my last post i have read of Lyrica causing cerebral oedema. What i know of the brain is that if you mess with it, such is its complexity, that it may precipitate unpredicted ‘emergent phenomena’ (read ’stuff’).
The last part of your comment, is the big reason why I try really hard to stay away from meds, in general.
I really appreciate your insight on this.
Thanks again!
Lyrica update… This is the sixth week i have been off it… Symptoms abating now… Concerns for people on this medication… the calcium channel blocking mechanisms stabilise the neuronal membranes but what else they do is unknown. I would say that it is not uncommon for fluid retention of about 5 kilos to be involved so people may see a drop in weight without it and a pudgyness on it.. The subjective ontological effects of withdrawal remain largely unpredictable but could well include destabilisation after there has been a medicated enforced stability. So some people can look forward to feeling like shit (Agitation, irritability, anxiety, diaphoresis (nocturnal), insomnia, nausea) when they come off this drug. If they are on it in association with SSRIs (very common now) then there can be increased serotonergia where this was absent whilst on Lyrica. I would peersonally urge great caution when coming off this medication. Never ever cold turkey… At least one case of documented cerebral odema has been attributed to this. Above all we ought to distrust pharmaceutical companies who proclaim side effect free neurodynamic medications. suggest
Hi my doctor gave me Pregabalin and Tramadol to take at the same time I had nealy every reaction that is possted and I have a lot of syimptoms still now after 5 months and I only took one of each and no one can tell me when I will get better I just get the run around I cant work at the moment the ingery that I was given the tablets for is still there it is so frustrating when you dont know what to do thanks Graeme
Hi my doctor gave me Pregabalin and Tramadol to take at the same time I had nearly every reaction that is posted and I have a lot of symptoms still now after 5 months and I only took one of each and no one can tell me when I will get better I just get the run around I cant work at the moment the injary that I was given the tablets for is still there it is so frustrating when you dont know what to do thanks Graeme
i haven’t read this thread carefully so please excuse any irrelevance. I was on Lyrica for my epilepsy (300mg twice daily). I stopped a month ago. My neurologist’s advice was to taper the dosage over 6 weeks. I was impatient, too eager to finish so i stopped immediately. Bad, I know. I have since lost the weight that i am sure I gained due to Lyrica (down 70kg to 64kg), and experienced awful insomnia for the first three weeks, although it is now improving. I have to exercise a lot now to work up an apetite, which is not altogether a bad thing. I’m happy with the weight loss, and happy that my sleep patterns are slowly returning to normal. I hope this is helpful.
Gaeme
Visit the website http://www.creativepain.com.au for more advice and support on this. Tramadol may well cause the symptoms you explain as it has an SSRI component to it. Hang in there – your symptoms should slowly abate over time. Making sense of your pain will make sense of your self these days, given as you say doctors are limited with most persistent pain states…. What won’t help is blaming yourself or your partner or your job or your mother – all the stuff that is attributed to the so called ‘mind’ when in fact your pain is all in your brain. As I say vist the above site… Above all trust your judgement on your pain… You are the biggest expert on your pain – learn to read your pain like a fisherman reads the weather. When there’s shitty weather stay home and mend your nets – but when the weather is fine – fish!!!
jp – we have a saying in Australia (yes it’s crude
) when you take extraordinary risks – but you really did fart in fate’s face. You could have seized and become very unwell. Did you say you lost 70ks or you came down from 70 to 64? Take care man…
David,
thanks for all of the information on lyrica that you have provided for us.
No such thing as side effect free medication. Good luck with getting off of the meds.
JP
thanks for chiming in on the lyrica issue. Good to hear that the withdrawal symptoms are finally lessoning. I can’t imagine what it must have been like to quit a drug like that cold turkey.
glad to know you are doing ok now.
Graeme,
I am sorry to hear you are having such troubles with the meds. I know that there is a huge temptation to think that medication will help with just about any illness. This just isn’t the case.
While I would never tell someone else what is best for them, there are other options available. Talk them over with a doctor….informed doctors should be able to discuss alternative treatments with you as well.
I hope you start to feel better soon.
Good luck
I took Lyrica for Fibro/MFS one wk. 150MG daily and felt better, slept well, upon 2nd wk. dosage was increased to 300 mg. daily. At the end of the 2nd. wk. my toes wouldn’t touch the ground, my ankles & calves swelled 3″ larger, I gained in one week 20
pounds & couldn’t urinate. Called the doctor, he decreased dosage to 150mg. daily and the serious nerve pain began. It felt like bee stings all over. Sleep stopped. Trying to taper off with no directions from the doctor. The pain in my feet, hands, legs and arms is moving to my chest. I have sensations of my skin burning. It is a kidney failure waiting to happen and a dangerous drug.
Joy,
oh my god! This is a perfect example of how a certain drug, can not work for everybody.
And also reinforces the reason why I choose to manage my illness without drugs.
I hope you find a way to cope with tapering off Lyrica. What you are going through sounds horrific!
Hugs!
Joy – it is important that your doctor file an adverse reaction document to the appropriate authority. What you are describing suggests a central sensitisation ’storm’… Lyrica should induce the opposite but as the noted neuropharmocologist Carl Faingold said “Despite all our understandings of the brain, we really don’t understand even the simplest of tasks…” Pain is soooo complex. Take care and trust your intuition….
David: Thank you for your comments. I’m off the Lyrica and my body is exhausted including my kidneys from filtering toxins left in my body. My pharmacists called me reporting Lyrica case studies had 17-25% edema while Neuronton (gabapemtem) has case studies of 2-3% edema. I’m not trying anything else. Joy
JOY
Hi joy I am having lots of problems at the moment I have angsiety panic attacs during the night thinking that I am going to die
the worst part of it is I am a acting spiritual phycolegest clairvoyant and I give people hope and positive thinking but at the moment its not happening with me its scary I only took 2 tablets just one night and havent touched them sense
hi,my name is nichol,i was put on lyrica2 1/2 months ago,for pain relief,but it did not help,and i noticed i was having weird muscle pain,and joint and worse migraines,and just a feeling of not being well.
so i read that you should have no side effects if you taper over a week,well,by the third night after stopping them i started having severe panic attacs,and severe nausea and vomiting,i was afraid for my life and i called the original dr. he told me to start it again so i did but i only had 75 mg cap. i took it and a ambien and woke up early the next morn.panicking again,so i took another 75 and i was like a i don’t even know how to explain it tired but awake,panicky but not, nauseated,and the severe migraines and muscle and body aches,so the slugeshness wore off a little in the afternoon,and i picked up some lower doses at the pharmacy,i started getting anxiety at bed time so i took 25 mg at 10:30 and a ambien at 11:20 and now i’ve been up since 3:20 first i took a 25 at 3:30 and i couldn’t control the shakng so i took another 25 at 5:20.
this is scary i am also a very spirit filled believer and i know Jesus is with me,but i am worried for my health,please don’t start this if you don’t have too.
i’ll be calling the dr. as soon as it opens to see what is the best waay to go about coming off this.
Nichol: I immediately found that I could not take Tramadol (Ultram) or Ambien when taking the Lyrica. It seems to cause heart palpations and anxiety. Talk to your Doc or Pharmacist regarding interactions with these drugs. After I tapered off Lyrica I felt bee stings throughout my body. I thought I was getting shingles (which is what Lyrica was sold originally to ease pain after shingles). It’s supposed to stop the feeling of standing on a cactus (as advertised in Reader’s Digest) but it also causes that sensation when tapering off it. I personally think the panic attack feeling is your body storming and your heart racing which simulates a panic attack. It really puts stress on your heart and kidney. I ended up taking Milk thistle to detox and Charcoal capsules to get the Lyrica out of my system. God Bless you…I really care. Joy
thank you so much Joy i ended up first at a primary care because i started vomiting severly around 6:30 and disentary,they did some tests and my urine showed i was really dehyderated from being sick since sunday,that dr. of course told me t could not be from the lyrica and not to take any more,and gave me med.for nausea,and sent me for blood work.things got worse throught the day and i made the er,at around 9:00 i was terrified,the nurse believed it was the lyrica,but of course she got off right after i got there,and they gave me 2 bags of fluid,the dr.came in and said there is no way it could have been caused by the lyrica,and i had a virus because my white blood count was down along with my potasium,they sent me home and told me i have to wean my self down again because i put myself back on with those few doses,i’m sorry i ever went back on it!i’m worried for my health,and don’t know what is the right thing 2 do,i wonder if the milk thistle and carcoal would be a good idea for me?and what about for sleep,my body and mind is so exausted,any comments would be great,and the bee stings are in my left hand and wrist tonight..how long did it take untill it all stopped?
http://www.cfssquared.com/2007/08/24/i-am-not-a-doctor-nor-do-i-play-one-on-television/
Nichol: It sounds like your immune system is down due to the Lyrica and the vomiting, etc. is from something you picked up. Don’t try the Charcoal capsules unless your doctor says to. Milk thistle can’t hurt you. Take 1 a day. It will clear out toxins. I still have the bee stings, problems with my hands and feet. Lyrica will probably be taken off the market…but not before some serious damage is done. Call your pharmacist and get specific directions as to how to taper off. I’m worried about you. Tell the pharmacist how much Lyrica you have taken and they can work out a plan for you. So in answer to your question it has not stopped fully yet but I’m much better than I was. I have been having Healing Touch to remedy the “out of sorts” feeling. After the 1st session, I was better. I was told by my Healing Touch person that my body was completely shut down and my immune system comprimised. My prayer are with you. sometimes nurses and pharmacist’s have more information that they can share with you because of prior experiences. God bless you, Joy
Nichol: After I was off the Lyrica for a few days, I started the Amiben CR again. I still am not sleeping. The Lyrica caused me to sleep like a baby but after all the side effects it was not worth it. The sleep cycle has been completely disrupted by the Lyrica. Don’t stay in bed. Get up and try read, getting on the computer will wake you even more. Joy
thanks for the info and the prayers,i need them!i talked with the pharmicest and she recomended to just try to stay on the 25 2 to 3 times a day until i see the primary care tommorrow.the vomiting has subsited but still nausea and diarea,the anxiety has slowed down also,this medicine is so scary i can’t wait to be off of it.i wish the dr.s would get more info,they looked at me like i had ten heads..i’m going to ask tommorrow how quick i can stop it and then what is best for the anxiety?and palpitations.my kids start school tommorrow and then i have a 18 month to look after i can’t be this sick alone.
thanks again for the prayers i know they will get me through,God bless,nichol
Joy where do i find a healing touch person,is that like reflexology?
Nichol I hope you get better soon and its hard when you have little children I’m on other tablets that make me sleepy soon I hope to get the answer until then I will keep on forcing my self to be happy it may take a little time but I will beet this You need to put it out there with the universe and good will come back to you where ever there is a problem there is a solution if you worry about the problem you wont find your solution if you have a problem write it down reed it 10 times and then destroy it and you will feel better
Graeme
Nicol and other make sure your adverse reactions are reported to the appropriate authority otherwise Pfizer will just dismiss yr claims. Be very careful coming off this medication and a very low dose phenothiazine and/or benzodiazepine may help. Don’t suffer in silence see your doctor. This medication has caused cerebral odema in the past so be careful how you come off it… Take care and trust yr intuition.
Hi David I only took 2 tablets once Pregabalin and Tramadol together and had all this happen to me but no one will listen because it isnt going on with them take care
Graeme
thanks guys i am going today to the primary care again,hopefully they will give me a idea how to wean down i have taken 3 .25 mg for the past two days and today the panicky feeling is back,it also seems like i get a increase in temp.when i take it my feet are cold and clamy,nausea and diarea still.and all joints muscles hurt and even some bones are hurting as of last night,this is how it was before i stopped it except the anxiety is there now too,thanks for all the support it means alot!
Nichol: On your search engine type in your city, state and Healing Touch. In ohio we have free services at Hospitals, and Hospices. A licensed person will usually charge. You should ask for a stage 4 or 5. Joy
Nichol I live in Tasmania Australia and don’t have the same resources that you all have so most of the time I fix my self thanks Graeme
Graeme,
I don’t know much about health care options in Australia, although there are a few readers that comment on here regularly that are from there. Perhaps, I can get one to comment on this post.
There are some CFS/ME resources in Australia. Perhaps they may be able to give you some help.
http://www.mecfs.org.au/about.html
http://www.sacfs.asn.au/index.html
I hope you are able to get some help.
I will be thinking of you.
hi everyone,i just wanted to give u a update,i seen the primary care yesterday,and they said to go down to two tabs yesterday and stay on that for 4 days then one for four days then off,and something for anxiety at night but i know the symptoms will be worse when i’m completly off i don’t want to take it yet.i wish i didn’t have to take another lyrica they make me feel like crap.i pray for everyone on this board thanks for the support and i hope you all get the proper recorces and treatment for your problems.thanks again:-)
Graemma – I’m not sure if there is a Tassie ME/CFS society, but if not, the society in Victoria should be able to help you find a doctor specialising in the condition. see http://www.vicnet.net.au/~mecfs/ They helped me find a specilialist here in Melbourne. If your local GP is not taking your medical problems seriously I would recommend trying to find someone else. I’ve been through a few GPs and some a certainly more willing to spend time and energy sorting out difficult issues than others. Best of luck with it.
hello everyone,i just wanted to let you all know my pharmycist gave me the # to phizer and i called to report my problems and they said to taper off over at least 2 weeks and don’t take this medication after”dah”when i was telling them my symptoms of insomnia and everything else they said it was not ever reported from this medication.and i asked how long it stays in your system after the last dose and they said 1 to 2 weeks!and to refer back to my dr. for titration scedules.i told them the dr. can’t get any info. on this because there is none on your pamplets they are misleading even the pharmacy don’t have the proper info,mine was suprised at what i told her,she ended giving me her cell phone incase i needed to talk 2 her.please don’t take this if you don’t absoultly need to and if your thinking of coming off do it slow like david said today is about a week from when i took the 75 and i’m getting the anxiety today and the numbness in hands still can’t eat much and what i do it don’t last.please remember me in your prayers and i will you,i wonder what tommorrow will bring because i had cut down so much the next day..how is everyone else doing and what r u doing for sleep?
Nicol – i think you will be fine in the end… I have virtually no sequelae but – you may have some time to endure on the wrack as it were. Console yourself with the knowledge that very soon the symptoms will subside… Pfizer DO KNOW about the Lyrica discontinuation syndrome – especially the insomnia. Take care – hang in there – it will get better soon. I know this sounds trite but it’s not – some gentle pacing, walking call it what you will – will help. Be gentle on yourself and lots of tlc at the moment… best wishes, david
Hi Nichol , David and all my rehabilitation officer said I wont be able to go back to work where there is pushing pulling lifting and twisting and with sleeping problem when I cant sleep I play Solitaire or Mah Jongg or a card game you like on the computer even with anxiety it sometimes helps It mite keep you sane for a while writing will help as well If any one wants to read some things I have wrote to make people positive go to http://www.poetry.com and put in my name in the spot search for poets Graeme Edgerton it may make you feel good by for now take care Graeme
hi everyone please pray for me today,i’m vomiting severly and am feeling really bad i can’t keep my body temp. normal and the bee stings are throughout my hands and arms i have no strength and can’t stop shaking.grame i read your poetry yesterday it’s beautiful.
Nichol I will get you to believe in something for me I know it will work say when you get down or need strength GRAEME PLEASE HELP ME and you can take my strength and I will take your hand and help you through any thing I do it for lots of people and they always come back and thank me take care and believe in your self and listen to my poetry it will give you strength my thoughts are with you Graeme
Its me again with giving strength my hole family give the same my wife and 4 children even down to the 11 year old helps people so just believe Graeme
Hi to everyone: Yesterday I saw my doctor of 30 years. I went into great depth to let him know ALL the side effects I had taking Lyrica. I asked him to file a report with the drug company and the FDA. He pointed to my very thick file and said no he wouldn’t do a report because the FDA would tie him up for years and need my complete history along with my consent to all my records. He said that was the reason doctors don’t confront the FDA. My husband witnessed the conversation. God Help Us. I would like to know how many of this group took Lyrica for CFS/Fibromyalgia/Myofacia Pain Syndrome. If you think about this drug; it was constructed to stop Postherpetic Neuralgia or PHN. Pain from the touch of light clothing or bedsheets & burning or stabbing pain where the shingles rash had been. It seems to also cause the same symtoms. My advice to CFS/Fibro/MFS no drugs period. Joy
hi guys back to the er yesterday,dehidrated again and really run down,he seemed to understand what was going on they gave me fluids nausea medicine and something to calm my body down.i hope and pray that things will ease up soon,as i hope the same for all of you..thanks