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Does your lyrica stop working?
I am on 300 mg of Lyrica a day and it was doing wonders for me. I am now fighting a bad flare and my doctor doesn't want a higher dose although I'm going to fight him over it. When is the dose too high? Is it inevitable that it will stop working?
I was on the 150 twice a day and after 4 months it just stopped working. My doctor keeps going up on the dose and I'm not noticing any changes, All of a sudden I had an increase in the numbness neuropathy in my leg and foot and then Bam for the first time I got the painful Neuropathy. Im a nurse and had 3 spinal surgeries and my nerve pain was horrible. I had been in constant pain for 2 years, then I started on lyrica and OMG it was heaven sent, now it stopped working and Im in worse pain then before.
I realize it has been a while since this was posted, but thought I would throw my thoughts in for those that are searching for answers.
I have been told by my Rheumotologist, studies have shown that Lyrica dosages any higher than 300 mg have not shownto be beneficial. Apparently, the percentage of people who found increased benefits are very low, so most Dr.'s will not go with a higher dose. (I hope my explanation is not "as clear as mud" & makes sense!)
Also, I go to a Sleep Clinic (after the sleep study, of course) I have tried many, many medications to help me sleep. I am extremely sensitive to meds, so the list is long! However, my Dr. Doesn't give up, there are an incredible amount of drugs to help you sleep, do not give up! Sometimes you have to go through a lot of trial & error to find the right med for you. If a med helps & there is a "but" attached to it (it helps, but i have bad dreams, it only helps for a couple hours, I feel sooo groggy the next morning, etc...) TELL your Dr., he is not a mind reader! Maybe they just need to adjust your dosage or switch to something else in that class of drugs or an entirely different med altogether! I am currently on a muscle relaxer for sleep. I fall asleep pretty quickly & sleep a deep, restive sleep & wake up refreshed (at least as refreshed as I can get!),without the groggy drugged feeling. YOU have to be your own advocate, no one else knows how you feel or will fight for your health.
Hang in there & good luck,
Bonnie
I have been told by my Rheumotologist, studies have shown that Lyrica dosages any higher than 300 mg have not shownto be beneficial. Apparently, the percentage of people who found increased benefits are very low, so most Dr.'s will not go with a higher dose. (I hope my explanation is not "as clear as mud" & makes sense!)
Also, I go to a Sleep Clinic (after the sleep study, of course) I have tried many, many medications to help me sleep. I am extremely sensitive to meds, so the list is long! However, my Dr. Doesn't give up, there are an incredible amount of drugs to help you sleep, do not give up! Sometimes you have to go through a lot of trial & error to find the right med for you. If a med helps & there is a "but" attached to it (it helps, but i have bad dreams, it only helps for a couple hours, I feel sooo groggy the next morning, etc...) TELL your Dr., he is not a mind reader! Maybe they just need to adjust your dosage or switch to something else in that class of drugs or an entirely different med altogether! I am currently on a muscle relaxer for sleep. I fall asleep pretty quickly & sleep a deep, restive sleep & wake up refreshed (at least as refreshed as I can get!),without the groggy drugged feeling. YOU have to be your own advocate, no one else knows how you feel or will fight for your health.
Hang in there & good luck,
Bonnie
it did stop working, It wonders for 3 months then BAM, stopped, I was on 300 mg. I did not want to get the higher dose (450 mg), I dunno why, just don't want to.
*******WARNING...LONG POST LOL**************
Thank you SO much for the info. I'm feeling quite isolated right now and the fact that you took the time to write that out....for ME...is really, really heartwarming. You have NO idea.
I do take a sleep aid which I started taking before I had Fibro. A few years before I became sick with it, I had a sleep study done (2004) because I have migraines and my doc wanted to see if they might be related somehow to my sleep. During that sleep study it was discovered that I fell asleep quickly but never went into a deep sleep. I'd spend the whole night just hovering under consciousness. They put me on .5mg of clonazepam for that. As far as I was concerned...I was sleeping fine. I would fall asleep quickly and stay asleep for the whole night however I did have parasomnias where I would get up during my sleep and do strange things (like wash my husbands face. LOL.)
Then, in early 2005 I began to get sick and after a year and a half of declining health, was diagnosed with CFS. Then almost a year after that, the pain started and I was quickly diagnosed with Fibro.
I've since had about 4 more sleep studies and they all show that I don't go into deep sleep, even when I take my clonazepam which was increased to 1mg and then 1.5mg, the dose I am currently on.
Now, here's the big problem in terms of adding or changing my sleep aid. I had another sleep study about 3 weeks ago to determine if a CPAP machine would help me get better quality sleep. During that study it was discovered that I do not have Obstructive Sleep Apnea, during which you attempt to take a breath but it doesn't get where it needs to go. I have Central Sleep Apnea which means that my body "fails to attempt to take a breath." Since they were trying to get me adjusted on the CPAP and were busy increasing the pressure, changing the type of mask, etc. during the night, they didn't have time to really monitor the events when I failed to attempt to breathe. I asked how long I would go without taking a breath but all she could tell me was that I had several (and I got the impression that it was lots of several) events during the night. An "event" is defined as a 10 second interval. So I was going at least 10 seconds without attempting to take a breath, several times during the night and yet my oxygen sat was stable.
Immediately I asked her if she felt it could be from my meds as I'm sure many of them are central nervous system depressants. She said yes it could be from that but that she'd have to refer me back to the sleep specialist. I see him at the end of November.
I have also tried trazodone but it gave me severe insomnia....sounds like what you had. I was EXHAUSTED but I could not fall asleep. I think I took it for 4-5 days and I don't know if I slept at all during that time.
Right now, I don't even usually attempt to get some sleep until about 6am. And even then on a really bad night I won't get any sleep, on a bad night I'll get maybe 2 hours and on a really good night I'll get 4-6 hours. I probably get one good night about every two weeks. I do realize how important good quality (and quantity) sleep is, especially to Fibro patients so that's why I really want to just try to address that.
I know it's going to be very hard to come off of all my meds and it's going to leave me in a lot of pain. And there's your vicious cycle again. When I do get off the meds and try to just address the sleep issue, I'll be dealing with increased pain which of course, will affect my sleep.
ARGH !!!!!!!!!!!!!!!!!!!!!
Again, thank you so much for your time. I'm going to ask my doc about the Ambien. I live in Canada and my health care coverage is pretty good so I'll see what she says about it. I think I'd give my left arm to get a good night of sleep. I just always feel like cr@p. Thank you so much for validating my feelings. My mother tells me just to go to bed earlier and then I'll be fine. That doesn't work for me.
Thank you SO much for the info. I'm feeling quite isolated right now and the fact that you took the time to write that out....for ME...is really, really heartwarming. You have NO idea.
I do take a sleep aid which I started taking before I had Fibro. A few years before I became sick with it, I had a sleep study done (2004) because I have migraines and my doc wanted to see if they might be related somehow to my sleep. During that sleep study it was discovered that I fell asleep quickly but never went into a deep sleep. I'd spend the whole night just hovering under consciousness. They put me on .5mg of clonazepam for that. As far as I was concerned...I was sleeping fine. I would fall asleep quickly and stay asleep for the whole night however I did have parasomnias where I would get up during my sleep and do strange things (like wash my husbands face. LOL.)
Then, in early 2005 I began to get sick and after a year and a half of declining health, was diagnosed with CFS. Then almost a year after that, the pain started and I was quickly diagnosed with Fibro.
I've since had about 4 more sleep studies and they all show that I don't go into deep sleep, even when I take my clonazepam which was increased to 1mg and then 1.5mg, the dose I am currently on.
Now, here's the big problem in terms of adding or changing my sleep aid. I had another sleep study about 3 weeks ago to determine if a CPAP machine would help me get better quality sleep. During that study it was discovered that I do not have Obstructive Sleep Apnea, during which you attempt to take a breath but it doesn't get where it needs to go. I have Central Sleep Apnea which means that my body "fails to attempt to take a breath." Since they were trying to get me adjusted on the CPAP and were busy increasing the pressure, changing the type of mask, etc. during the night, they didn't have time to really monitor the events when I failed to attempt to breathe. I asked how long I would go without taking a breath but all she could tell me was that I had several (and I got the impression that it was lots of several) events during the night. An "event" is defined as a 10 second interval. So I was going at least 10 seconds without attempting to take a breath, several times during the night and yet my oxygen sat was stable.
Immediately I asked her if she felt it could be from my meds as I'm sure many of them are central nervous system depressants. She said yes it could be from that but that she'd have to refer me back to the sleep specialist. I see him at the end of November.
I have also tried trazodone but it gave me severe insomnia....sounds like what you had. I was EXHAUSTED but I could not fall asleep. I think I took it for 4-5 days and I don't know if I slept at all during that time.
Right now, I don't even usually attempt to get some sleep until about 6am. And even then on a really bad night I won't get any sleep, on a bad night I'll get maybe 2 hours and on a really good night I'll get 4-6 hours. I probably get one good night about every two weeks. I do realize how important good quality (and quantity) sleep is, especially to Fibro patients so that's why I really want to just try to address that.
I know it's going to be very hard to come off of all my meds and it's going to leave me in a lot of pain. And there's your vicious cycle again. When I do get off the meds and try to just address the sleep issue, I'll be dealing with increased pain which of course, will affect my sleep.
ARGH !!!!!!!!!!!!!!!!!!!!!
Again, thank you so much for your time. I'm going to ask my doc about the Ambien. I live in Canada and my health care coverage is pretty good so I'll see what she says about it. I think I'd give my left arm to get a good night of sleep. I just always feel like cr@p. Thank you so much for validating my feelings. My mother tells me just to go to bed earlier and then I'll be fine. That doesn't work for me.
I think my doctor will allow me to go higher than that. I'm not sure Lyrica is helping me that much. My theory on medicine is anything might not work and if it works, your body will probably adapt to it. Obviously fibro isn't cured with Lyrica, so I would expect it not to solve the issues. I have found some alternative medicine to help - massages, etc. Changing what I eat, watching the stress, watching what I do, etc. The bad weather almost always affects me. I do trigger point therapy on myself and if I can't reach the other places, my husband or massage therapist does it.
I hope you get some good relief from the increase in the Lyrica. I know it's important to give a new medication or a change in dose a chance to see if it's going to work, but I would say that, since a) you've been on the Lyrcia for a while now and b) you've had a quick relief before when changing your dose - if you don't notice an improvement in a week, then I would call your doc again and let him know that the increase is not helping and you feel strongly that it has stopped working all together for you. I would also call him if you find that the side effects (weight gain and word finding problem) get any worse. I can totally relate to both of those side effects - they were horrible for me also and a very big part of the reason why I had to stop taking Lyrica.
I wish you the best of luck with the increase and I hope you start feeling better real soon!
I wish you the best of luck with the increase and I hope you start feeling better real soon!
I wish you the best of luck with your doctor's appointment.
It's very common for fibro patients to have a lot of difficulty sleeping - both falling asleep adn staying asleep. Do you currently take any type of sleep aid? If not, you definitely may want to ask your doctor about one. I currently take Ambien 10 mg and there are many nights, even with that, that I'm still only able to get about 4 hours of sleep - sometimes even less - but sometimes a little more. I used to take the Ambien CR, which is controlled release and I felt it worked a good bit better - not necessarily to help me GET to sleep faster than the regular Ambien does, but definitely in helping to let me STAY asleep. Unfortunately, my insurance no longer covers the CR, so I had to go back to the regular. I'm hoping, that since I've heard there is a generic version of the CR being worked on, that once it is approved, that my insurance will start covering it and I can go back to it. During a particularly bad flare recently I was only sleeping max of 2 hours a night and of course, my pain levels were through the roof, not just from the flare, but also from the lack of sleep - anyway, my doctor tried me on trazodone instead of the Ambien, but I ended up not being able to take it. It worked differently on me than what she had hoped - instead of making me sleepy and able to sleep, it wired me up and made me hyper. I would take it, go to bed, and lay there staring at the ceiling literally all night long. So I went back to the Ambien.
Sleep is very important to everyone, but especially to fibro patients. if we dont' get enough (quantity) of not good enough (quality), it makes things worse. However, it's a vicious cycle - we don't sleep because we are hurting and we are hurting more because we're not sleeping.
I guess my point/suggestion with all this is, if you want to wean off your meds and start from scratch, I give you all the kudos in teh world - but I would definitely see about adding (or changing if you're alread on one) a sleep aid. Since your sleep is such a major symptom for you, if you are able to find something that will help you get some good sleep, you may find that you ARE able to get away with fewer meds - or at least at lower doses.
Best of luck and please let us know what you and your doctor decide!
It's very common for fibro patients to have a lot of difficulty sleeping - both falling asleep adn staying asleep. Do you currently take any type of sleep aid? If not, you definitely may want to ask your doctor about one. I currently take Ambien 10 mg and there are many nights, even with that, that I'm still only able to get about 4 hours of sleep - sometimes even less - but sometimes a little more. I used to take the Ambien CR, which is controlled release and I felt it worked a good bit better - not necessarily to help me GET to sleep faster than the regular Ambien does, but definitely in helping to let me STAY asleep. Unfortunately, my insurance no longer covers the CR, so I had to go back to the regular. I'm hoping, that since I've heard there is a generic version of the CR being worked on, that once it is approved, that my insurance will start covering it and I can go back to it. During a particularly bad flare recently I was only sleeping max of 2 hours a night and of course, my pain levels were through the roof, not just from the flare, but also from the lack of sleep - anyway, my doctor tried me on trazodone instead of the Ambien, but I ended up not being able to take it. It worked differently on me than what she had hoped - instead of making me sleepy and able to sleep, it wired me up and made me hyper. I would take it, go to bed, and lay there staring at the ceiling literally all night long. So I went back to the Ambien.
Sleep is very important to everyone, but especially to fibro patients. if we dont' get enough (quantity) of not good enough (quality), it makes things worse. However, it's a vicious cycle - we don't sleep because we are hurting and we are hurting more because we're not sleeping.
I guess my point/suggestion with all this is, if you want to wean off your meds and start from scratch, I give you all the kudos in teh world - but I would definitely see about adding (or changing if you're alread on one) a sleep aid. Since your sleep is such a major symptom for you, if you are able to find something that will help you get some good sleep, you may find that you ARE able to get away with fewer meds - or at least at lower doses.
Best of luck and please let us know what you and your doctor decide!
God yes, the finding words problem. I hate that. Searching for a word that's so common and right there...and yet you can't say it. And weight gain..I hear you, girl. I weigh more than I ever have in my life, more than when I was pregnant. I weigh double what I did in high school. :( And before I became ill I ran 4k every day and went to the gym 3 times a week. So the combination of the meds and being so sedentary has packed a LOT of weight on me.
gemini - thanks for all of the advice. I honestly don't recall that my symptoms improved when I started the Lyrica or when my doc increased my dosages. My general health has just gone downhill more and more over the past few years. It's really hard to know what's from the meds and what's a flare or what's just the ebb and flow of the disease. Maybe I just wasn't knowledgeable enough about Fibro when I was being put on all of these meds or maybe I just wasn't self aware. Nobody teaches you HOW to have Fibro. LOL.
Regardless...I'm seeing my doc on Wednesday and I'm going to ask her to wean me down and off of all my meds and start from scratch. I have a severe problem with sleep and I think we need to get back to basics and try to get that under control. I know I'm going to have a very hard time and I know it's going to take a long time...but I feel it needs to be done.
Trudie I hope you get some relief from your increase. I'm thinking about you.
gemini - thanks for all of the advice. I honestly don't recall that my symptoms improved when I started the Lyrica or when my doc increased my dosages. My general health has just gone downhill more and more over the past few years. It's really hard to know what's from the meds and what's a flare or what's just the ebb and flow of the disease. Maybe I just wasn't knowledgeable enough about Fibro when I was being put on all of these meds or maybe I just wasn't self aware. Nobody teaches you HOW to have Fibro. LOL.
Regardless...I'm seeing my doc on Wednesday and I'm going to ask her to wean me down and off of all my meds and start from scratch. I have a severe problem with sleep and I think we need to get back to basics and try to get that under control. I know I'm going to have a very hard time and I know it's going to take a long time...but I feel it needs to be done.
Trudie I hope you get some relief from your increase. I'm thinking about you.
Well, the last time I was there he told me no more increasing dosage and that because I was doing so well that we would talk about lowering my dosage. I put a call into him today saying that since the drug has stopped working for me why not just wean me off of it. Because I'm flaring bad he said if I tried to wean I'd be in really bad shape. He wants me to add another 75 mg bringing me to 375 mg per day. Hopefully I will feel an improvement right away as I did previously when my dose was increased. I am glad I may get relief but am tired of the weight gain and finding words problem.
sometimes if you're on multiple medications it is difficult to decipher which medication has stopped working. A lot of times it's a matter of some trial and error, pretty much the same way it is when you're trying to find a medication that works - you adjust one medication and see if makes any difference and if it doesn't, then adjust another one, so on and so forth. Obviously, this should ONLY be done under the supervision of your doctor - NEVER adjust your medications on your own.
As far as my own experience with the Lyrica - I had always experienced increased relief whenever my doctor increased my dose - until we went from 300 mg daily to the 450. With that increase, I experienced no change in relief (or lack of at that point), and began experiencing bad side effects (weight gain, inability to concentrate, extreme sleepiness, nausea/vomiting). We tried keeping me at the 450 for about a week to see if it would start helping, but the side effects got too bad and the lack of relief was not worth continuing (both my doctor and I agreed on that). Since the 300 mg had also not been providing me with any relief, my doctor felt strongly that it had simply stopped working for me.
I didn't have any trouble with stopping the Lyrica - we didn't stop it all at once, but weaned me down off of it - however, we weaned down pretty quickly (within about 2 1/2 weeks). It is important to not stop Lyrica cold turkey, as doing so could trigger seizures, even in people who don't have a seizure disorder.
When you began the Lyrica, did you notice a decrease in your symptoms? Do you still experience that same amount of decrease? If you do, then I would say that it is still working for you at the dose you're on. If you're experiencing an increase in symptoms, you may want to discuss with your doctor about possibly increasing your dose (of course, depending on what dose you're on now) and see if it helps.
As far as my own experience with the Lyrica - I had always experienced increased relief whenever my doctor increased my dose - until we went from 300 mg daily to the 450. With that increase, I experienced no change in relief (or lack of at that point), and began experiencing bad side effects (weight gain, inability to concentrate, extreme sleepiness, nausea/vomiting). We tried keeping me at the 450 for about a week to see if it would start helping, but the side effects got too bad and the lack of relief was not worth continuing (both my doctor and I agreed on that). Since the 300 mg had also not been providing me with any relief, my doctor felt strongly that it had simply stopped working for me.
I didn't have any trouble with stopping the Lyrica - we didn't stop it all at once, but weaned me down off of it - however, we weaned down pretty quickly (within about 2 1/2 weeks). It is important to not stop Lyrica cold turkey, as doing so could trigger seizures, even in people who don't have a seizure disorder.
When you began the Lyrica, did you notice a decrease in your symptoms? Do you still experience that same amount of decrease? If you do, then I would say that it is still working for you at the dose you're on. If you're experiencing an increase in symptoms, you may want to discuss with your doctor about possibly increasing your dose (of course, depending on what dose you're on now) and see if it helps.
Can I throw a question in here? How do you know if/when your Lyrica has stopped working? Is it the only med you take?
I take so many meds that I don't have any idea what works and what doesn't work. When I see my rheumatologist he always asks how the Lyrica is working for me. How am I supposed to know?
Also, question to geminigirl: You say you were on it a few years ago at the max dose. Was it hard for you to come off of it?
Good luck Trudie. I hope your flare is short lived. I'll be watching this thread as I'm very interested in the responses.
I take so many meds that I don't have any idea what works and what doesn't work. When I see my rheumatologist he always asks how the Lyrica is working for me. How am I supposed to know?
Also, question to geminigirl: You say you were on it a few years ago at the max dose. Was it hard for you to come off of it?
Good luck Trudie. I hope your flare is short lived. I'll be watching this thread as I'm very interested in the responses.
I'm sorry to hear you're having such a bad flare. I've been dealing with a flare myself recently - the rainy/damp weather we were having really sent me into a tail spin.
According to the prescribing information on the Pfizer/Lyrica website, the maximum daily dose for Lyrica for fibro is 450 mg daily. When I was on it a few years ago, I didn't realize that was the maximum dose, but that was the dose that I was on.
I'm not sure if it's inevitable that the Lyrica will stop working to control your symptoms, but I suppose it's like any other medication that you have to take long term - it could happen. I had to stop taking the Lyrica for a combination of it having stopped helping and also I had started experiencing some bad side effects from it. My doctor and I had both agree that IF it was still helping, then we could/would deal with the side effects, but since it had stopped working, then the side effects were definitely not worth keeping me on the dose I was on.
I wonder if your doctor would consider adding another pain medication to your Lyrica regime to help get you through this flare? I'm not saying that you should take, or your doctor would prescribe, narcotics, but I do know they CAN be taken with the Lyrica.
I hope you start feeling better soon!
According to the prescribing information on the Pfizer/Lyrica website, the maximum daily dose for Lyrica for fibro is 450 mg daily. When I was on it a few years ago, I didn't realize that was the maximum dose, but that was the dose that I was on.
I'm not sure if it's inevitable that the Lyrica will stop working to control your symptoms, but I suppose it's like any other medication that you have to take long term - it could happen. I had to stop taking the Lyrica for a combination of it having stopped helping and also I had started experiencing some bad side effects from it. My doctor and I had both agree that IF it was still helping, then we could/would deal with the side effects, but since it had stopped working, then the side effects were definitely not worth keeping me on the dose I was on.
I wonder if your doctor would consider adding another pain medication to your Lyrica regime to help get you through this flare? I'm not saying that you should take, or your doctor would prescribe, narcotics, but I do know they CAN be taken with the Lyrica.
I hope you start feeling better soon!
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