Anyone here tried/on really high-dose Lyrica??

[jtroy]

Hey everyone,

Sorry I haven't been here as much lately. The holidays were really painful for me this year and I'm only now starting to feel better (hey...we'll take that any time we can get it, right?) Anyway, if I missed an email to anyone I'm sorry...just resend it (if it isn't already too late) and I'll get right on it.

Anyway, about the Lyrica. My pm doc put me on it a long while back..I guess right when it first came out. I knew nothing about it and when he told me it was a gabapentinoid like Neurontin (his words) I kinda balked b/c Neurontin never really did much for me. But, he convinced me and said he was going to start me on a fairly moderate dosage knowing my metabolism and all b/c he really wanted me to give it a shot and knew that if it didn't help after a couple of months I wouldn't stay on it....I'm on enough as it is.

So he started me at 75mg TID and wanted me to move up by 75mg as soon as I could if it helped. Well, it definitely helped but I found it to be absolutely the most sedating drug I've ever known....even far more sedating than the 800mg of Methadone I used to take every day. At first it wasn't too bad but once it hit 300mg/day it was.

So today I'm up to 1200mg/day which is about double the max on the label depending on what you are taking it for and it isn't sedating anymore. However, it works well and I know alot of you who have had positive responses to Baclofen also have Lyrica....just wondering about that after reading all the recent Baclofen stuff on here.

Anyone taking more than 600mg/day? For those of you about 300mg/day did you have an instant response or was it a gradual one. The biggest thing I'm concerned with is tolerance. I'm about to start yet another opioid taper and if I knew upping the Lyrica even higher would help I might consider it. I'd rather take it for pain than Fentanyl but I don't want to get so high that I couldn't move later (if I'm not already there.)

Anyway, just curious to hear what you guys think. Take care.

Regards,

T. Jones, DVM

[ErinENj]

Dr. Troy,

I'm sorry to say, but I'm the opposite. I am on something near 325mg a day and my dosage has been pretty stable for the few years (I think it's been that long. It is hard to remember sometimes. ) I have been on it. I had my first increase since I started it a few months ago, and only went up 25mg.

I had results instantly (relatively speaking) but they peaked after spending some time on it. It lessened my leg pain quickly but took awhile to get it down to the level I enjoy today.

I'm sorry I can't be of more help. I really think this is one of those cases where what works well for one only works well for another at significantly higher doses. I hope that your level levels out somewhat but retains its effectiveness.

PS: Codi is doing ok. We are still struggling to get his weight down
(even with changes to his food and number of biscuits, daily walks - short ones since his legs can't handle long ones- and everytime we are so sure he's lost 10 pounds, the scale doesn't change) but he's functioning pretty well for now. Like us, he has his good and bad days. But he's well enough to play with the dog next door - who is the size of a medium sized pony (he is the most massive dog I have seen but is pretty gentle. But I'd hate to be in his yard at night! ) Mom is thinking he will have to have the surgery this year even though she's still really gun shy about it. Until then we are just trying to keep him comfy and happy. The snow we got yesterday makes him so happy! He's been rolling in it and doing "doggy angels" at every chance he can get. It's so adorable! Thank you for your help with him and especially your ability to calm me down when I was freaking out about his condition!

[mrsdoubtfyre]

Well, I have never seen someone using 1200mg a day of Lyrica.

As far as tolerance goes...you do know that Lyrica is not appreciably metabolized in the body. It is excreted whole via the kidneys.
So tolerance from metabolism issues should not occur. Should your kidney status suddenly change, you would not clear this drug
as before.

But I don't think anyone would know about receptor tolerance at this time.
I'd call Pfizer if I were you. Maybe they would give you some additional information that is not available publicly yet.

One thing to watch out for is breathing problems. Now that more people are using Lyrica, there are more reports of sudden shortness of breath or difficulty breathing. Why this happens is not understood well either.

[jimac]

Hey Doc,

I have been taking Lyrica since it came out. Started on a low dose and currently taking 600mg/day for the last year.
Lyrica has really helped with my neuropathy in my arms and hands.

I think that I read somewhere that dosages above 600mg had little additional benefit. I may be wrong.

My Doctor has never mentioned going above 600mg.

I also take 40mg of Baclofen without any problems.

Take care,
Jim

[Kira]

I haven't taken Lyrica, but a few years ago was on Neurontin (similar but not the same). It took two tries for me to successfully stop the Neurontin, because the first time we tapered it really quickly and I got pretty sick. As soon as we put my Neurontin dose back to normal, the "sickness" went away, so we thought it was some kind of withdrawal effect. At the time, my doctors were saying it is unusual to have much trouble coming off of Neurontin, but I really did. My mood was awful, I had a lot of GI upset, I felt hot & cold all of the time, and I just wanted to curl up in bed and have everyone leave me alone. It was strange. Since we didn't have that good of a reason for stopping the Neurontin at the time (just that we felt it wasn't doing much), we put my dose back to normal and decided to try a slower taper later. The second taper went much slower (over about a month; the first time was over a week or so), and I didn't have much trouble with it. Still had a little GI upset, and some mood issues, but was much better.

The only reason I bring this up is that I really think my body did become dependent on the Neurontin, somehow. I had been on it for over a year, and while I don't remember my actual dose anymore, I know it was pretty high. I don't know if this is relevant or not to the question of building tolerance with Lyrica, since it is a different drug & we are different people with different diseases and very different metabolisms (your metabolism burns through high doses of drugs-- mine can't even metabolize my breakfast thanks to broken mitochondria). But it does make me suspicious that there could be some kind of potential for tolerance/dependence in some people for drugs in this class. I have no idea what the literature actually says about this, though. For all I know, I just happened to have a weird GI/mood/autonomic bug or even a mito flare that just happened to occur right at the time they were tapering my Neurontin, and it just happened to go away as soon as I started taking the Neurontin again. I kind of doubt it, though. I do know that I really don't want to take that stuff again if I can avoid it, because it was just a strange med for me overall.

[jtroy]

Thanks everyone for the replies....I have been taking a look at this and I'm beginning to think that perhaps I should either add Baclofen or Neurontin to the picture as opposed to upping the Lyrica even higher. Mrs. D's idea about calling Pfizer is a good one and I think that I am going to pursue the idea. I'm not sure what the deal is with this whole Lyrica thing....all I know is that for the first time in years there is something that isn't a CII opioid that helps with my pain.

As a matter of fact, it isn't that the Lyrica stops it...it never ever goes away. However, it feels as though the "daggers" or sharp pain is dulled...it's very interesting....and I'm glad we've tried this because I'm starting my opioid taper now. I would like to get my Fentanyl down from 300ug/hr to 100ughr as soon as possible.

I have this goal that by the end of this year I have traded my opioids for the other techniques I've been learning so that I can get back to practice. I would feel comfortable doing so if I were off opioids....will it happen...I don't know. However, if there are other meds I can take other than the opioids I'd certainly like to pursue them.

Anyway....if anyone else has anything to offer, please do so...I'm really curious to see how folks do on high dose Lyrica. I know the label says that there are no real benefits to going beyond 600mg/day however I can testify that I do seem to get more relief from higher doses. One thing for sure is that once I hit 900mg/day it seems like the benefits are smaller from higher doses....my pm doc is willing to go even higher but I don't want to go from one super high level med to another and would also like to leave that room for later.

Thanks again,

Troy

[lobelsteve]

Thanks everyone for the replies....I have been taking a look at this and I'm beginning to think that perhaps I should either add Baclofen or Neurontin to the picture as opposed to upping the Lyrica even higher. Mrs. D's idea about calling Pfizer is a good one and I think that I am going to pursue the idea. I'm not sure what the deal is with this whole Lyrica thing....all I know is that for the first time in years there is something that isn't a CII opioid that helps with my pain.

As a matter of fact, it isn't that the Lyrica stops it...it never ever goes away. However, it feels as though the "daggers" or sharp pain is dulled...it's very interesting....and I'm glad we've tried this because I'm starting my opioid taper now. I would like to get my Fentanyl down from 300ug/hr to 100ughr as soon as possible.

I have this goal that by the end of this year I have traded my opioids for the other techniques I've been learning so that I can get back to practice. I would feel comfortable doing so if I were off opioids....will it happen...I don't know. However, if there are other meds I can take other than the opioids I'd certainly like to pursue them.

Anyway....if anyone else has anything to offer, please do so...I'm really curious to see how folks do on high dose Lyrica. I know the label says that there are no real benefits to going beyond 600mg/day however I can testify that I do seem to get more relief from higher doses. One thing for sure is that once I hit 900mg/day it seems like the benefits are smaller from higher doses....my pm doc is willing to go even higher but I don't want to go from one super high level med to another and would also like to leave that room for later.

Thanks again,

Troy

The only data I think you'll find is from Pfizer, but as it relates to toxicity and safety. I have not seen any efficacy data beyond 600mg day.

Based on your response to this high dose of this medication, it may be that your pain is primarily neuropathic. If that is the case then you should (or already have) consider neuromodulation. Intrathecal ziconitide? Ketamine infusion?

Your tolerance to side effects kows no bounds. Few of my patients tolerate 225mg bid, a hand ful can tolerate 300 bid. Most drop out at 150 bid.

[mrsdoubtfyre]

This clinic is a very highly regarded headache and chronic pain place.
I have attended their seminars.

It might be worth your while to travel to them.

It might be worth your while to see them:
http://www.nationalpainfoundation.org/MyTreatment/Spotlight_Saper.asp

http://www.mhni.com/

They have a huge seminar for professionals every spring. It is almost $200 but very worth it. It is all day long so plan for that.
The speakers are the best in the field and very good. Dr. Saper himself is easy to listen to and amazing. Give them a call to get on the mailing list.
Typically it is at the Ritz Carlton in Dearborn, but there are other hotels less expensive if you stay over.
The seminar could be helpful with content you may be able to use, and also it is a good window into their practice.

With your training you should be able to understand the technical content. But this seminar is really not intended for the layman.

[cindybear]

Troy,
I sure do hope all come true with your goals...That would be wonderful for you..And I will be cheering you on and also be saying a few prays along the way...I have never had any luck with those kind of drugs,,The side effects was just to much for me..Usually by day 2..I was getting off those drugs..But I am So glad they do work for you..i do know how hard it is to have a 8 year old head pain..Some days are just Disabling while others managable..I think your head pain is even longer then mine..But just know, I am in your corner cheering you on..Hoping all goes the way you want and one day you can practice and help out our little friends..Hugs, Cindy

[debhun]

I took Lyrica when it came out. I was on 175. At 175 i was as loony as can be. My feet and leg swelled to where I could not wear shoes. I was at work one day and I thought I was moving reallllllly fast. Boss looks at me asked me if I was okay. I told yea just moving the people on the way. She laughed and said Deb I don't know what they put you on but I wish I had a cam. She said you look like a robot in slow motion. After that day i came off of it after the 40 pounds I put on. Never again will I go on any kind of depression meds. I have lost 30 of the 40 pounds. I am still losing weight. I am not dieting I am just losing the pounds. I eat any thing. Would you believe I ate a whole cake myself in a week. Lost weight. So I hope to keep losing it. I need to get down to where I was 2 years ago. 30 pounds to go. I like not dieting.Yes I know it is not right losing it these way. But if the truth to be told I am afraid to tell Dr. Yes he knows I I have lost 30 pounds in 1 1/2 months and asked me I told him I was working on it. I know I did wrong. I don't want to know why. But to easy your mines. I am going to have a scope down my throat done soon. Then I will know.

Buy Lyrica is not for me

Best of luck to you

Deb