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Old 05-09-2008, 08:53 PM #1
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Originally Posted by EarlG View Post
Groskilly I would be careful about these huge doses of Lyrica, there may be some unpleasant longterm side effects. I would especially concerned about effects on thinking. Bizarre strange ideas, depression, memory loss could result over time. I know what it is like to have this severe pain so you might want to complement Lyrica with Tramadol and Mirapex. Jarrett (one of the person on this forum mentioned RLS (restless leg syndrome) as being possibly coexistent with PN. This is a very interesting idea which may very well be true. This would explain some of the characteristics of PN, its tendency to get worse at night and the partial relief one gets simplying by walking around a bit. This may explain why Mirapex may be very helpful as a adjunct to Lyrica. Interesting ideas -no doubt.
I had symptoms of RLS long before anything with the PN. It first started during one of my pregnancies. I'd say that was about 20 yrs ago. It went away for a long time and then back in the mid to late 90's it started up again but only once in awhile. I was put on Celexa in 2002 and that's when it got really bad. Backed off for a bit after coming off Celexa but started up again with Effexor. The PN stuff I first began noticing when I was on Celexa.
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Old 05-06-2008, 05:23 PM #2
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Default Lyrica vs Neurontin

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My Doc switched me from Gabapentin to Lyrica about a month ago. The Gabapentin was no longer helping much with my burning feet. I was at 3600mg of Gabapentin. I continued to take the remaining Gabapentin (300mg caps) here and there along with the Lyrica when the burning was bad and it seemed to help. Eventually I ran out of the Gabapetin and the burning became more intense (worse). I told my Doc I was taking both and he said he never heard of anybody doing that and doesn't recommend it.
A couple of questions.
Does it make any sense at all that the 2 drugs would work better in combination ?
I am taking 375mg of Lyrica and would like to increase the dosage. Does Lyrica have a max dose where the effectiveness peaks out like Gabapentin (3600mg) ?
Gerald
EarlG:
Groskilly, I agree with your physician. I also tried this and actually found them both to be rather antagonistic. There is no question that Lyrica is more effective than Gabapentin. However I wonder if over time Lyrica will be no more effective than Neurontin. I can remember how impressed I was when I first took gabapentin but over the years it lost its effectiveness except in very high doses. I am a retired physician (45 years a doctor) and developed painful neuropathy and like all of us searched for relieve avoiding at all costs narcotics. I also found that by giving a bolus of the medication (i.e., daily dose all at once) the medication was very much more effective. Although I would not recommend that for everyone only for old veterans like me. Also let your physician know. The biochemical theory why this may be more effective lies in the ability of drugs to saturate receptors (in this case the nerves or brain cells). In fact I really believe the basic lesion in this disease may lie within receptors in the brain which explains why when a sudden episode of pain occurs in the feet it is always bilateral. This is my first time on this forum and I may not have done this correcting- but I suppose the administrator will let me know. SO\o excuse me this time. EarlG
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Old 05-06-2008, 06:25 PM #3
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Welcome you did it alright no wrongs,just very interesting,and I hope
you come back. I was a E.R. Nurse for 25 years and first my feet,
and now hands and shoulders..I must admit I say phooie Drs. but
what would we do without Drs. that hang in there 45 yrs. there the best,
please come back. Sue
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Old 05-12-2008, 11:57 AM #4
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Default A note from a retired Doc to a retired RN

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Welcome you did it alright no wrongs,just very interesting,and I hope
you come back. I was a E.R. Nurse for 25 years and first my feet,
and now hands and shoulders..I must admit I say phooie Drs. but
what would we do without Drs. that hang in there 45 yrs. there the best,
please come back. Sue
Sue I am sorry to hear your disease has advanced to the your upper extremities. I believe Lyrica despite its many side effects could be most helpful in your case. Are you taking Lyrica? The overwhelming consensus is that Lyrica is very effacacious. However, unfortunately there is axiom in medicine "the more effective a drug the more side efffects".
And certainly Lyrica comes with its fair share of side effects. (see "askapatient.com/viewrating.asp?drug=21723&name=LYRICA"). However as one participant stated "you choose and you lose". And of course it comes down to what doctors have been saying for ever the key is "Management". Let me know if there is any advice I can give you that might be helpful (I guess I still have that "doctor-state-of mind" that wants to help).
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Old 05-06-2008, 11:24 PM #5
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EarlG:
Groskilly, I agree with your physician. I also tried this and actually found them both to be rather antagonistic. There is no question that Lyrica is more effective than Gabapentin. However I wonder if over time Lyrica will be no more effective than Neurontin. I can remember how impressed I was when I first took gabapentin but over the years it lost its effectiveness except in very high doses. I am a retired physician (45 years a doctor) and developed painful neuropathy and like all of us searched for relieve avoiding at all costs narcotics. I also found that by giving a bolus of the medication (i.e., daily dose all at once) the medication was very much more effective. Although I would not recommend that for everyone only for old veterans like me. Also let your physician know. The biochemical theory why this may be more effective lies in the ability of drugs to saturate receptors (in this case the nerves or brain cells). In fact I really believe the basic lesion in this disease may lie within receptors in the brain which explains why when a sudden episode of pain occurs in the feet it is always bilateral. This is my first time on this forum and I may not have done this correcting- but I suppose the administrator will let me know. SO\o excuse me this time. EarlG
Nope...ya done good!

Bilateral huh? I don't know...guess that might depend on the Dx? My left foot has always been more painful than my right. No idea why. My Dx is idiopathic PN. So far anyway. At some point when and if I can afford more testing I plan on seeking out a specialist in PN. I want more than just the basics ruled out.

Can't take Neurontin. Made me suicidal. So I manage with Tramadol and recently added Mirapex. So my symptoms are well under control for now. Yep, been blessed with PN and apparently some RLS thrown in for good measure.

And yes, we do all we can to reduce our symptoms to levels manageable for us. During the day I'm a 1 or less most of the time. Toward 9:00 or 10:00 PM I escalate to about a 4 or 5 before I take a Tramadol. That's much less than my levels were about a year ago when I first found this wonderful message board.
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Old 05-07-2008, 06:29 AM #6
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I also found that by giving a bolus of the medication (i.e., daily dose all at once) the medication was very much more effective.
You are exactly right.
My Dr had me start out slowly with Lyrica to watch for side effects. I had none. Started out with 75mg 2x a day, went to 75mg 4x, then to 150mg alternating with 75mg 4x a day. After a while I found more relief with 225mg twice a day and have kept with it.
Lyrica has allowed me to go from 400mg a day of Tramadol plus two Vicodin down to 150mg of Tramadol and one Vicodin. Hope to slowly cut out the Tramadol entirely.
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Old 05-08-2008, 08:51 AM #7
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Thanks again for all the input. I love this forum and the folks over at the Neuropathy Community Forum. I know many of you hang out at both.
Got a new Rx for Lyrica today with the big 150mg each pills. I'm to take 3 a day (maybe I'll throw down another around bedtime if needed). Many of you are taking another med along with the Neurontin and/or Lyrica. How does one decide which one of to try first ?

Gerald
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Old 05-09-2008, 09:14 AM #8
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Originally Posted by groskilly View Post
............. Many of you are taking another med along with the Neurontin and/or Lyrica. How does one decide which one of to try first ?
That would have to be in consideration
for your tolerances to different meds.
Some may have s/e that are undesirable.
Your doc should be the one to suggest.
But I've had good luck with Tramadol.
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Old 05-09-2008, 06:51 PM #9
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Default Mirapex also helps?

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Originally Posted by sallymander View Post
You are exactly right.
My Dr had me start out slowly with Lyrica to watch for side effects. I had none. Started out with 75mg 2x a day, went to 75mg 4x, then to 150mg alternating with 75mg 4x a day. After a while I found more relief with 225mg twice a day and have kept with it.
Lyrica has allowed me to go from 400mg a day of Tramadol plus two Vicodin down to 150mg of Tramadol and one Vicodin. Hope to slowly cut out the Tramadol entirely.
Jarrett mentioned adding Mirapex to your regimen on the idea that PN has a few similarities to RLS. See RLS (restless leg syndrome and Mirapex on Google. The propensity of PN to get worse at night and the partial relief one gets sometimes just by walking around for awhile (of course on a very soft carpet).
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Old 05-09-2008, 06:29 PM #10
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Default Bilateral disease

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Nope...ya done good!

Bilateral huh? I don't know...guess that might depend on the Dx? My left foot has always been more painful than my right. No idea why. My Dx is idiopathic PN. So far anyway. At some point when and if I can afford more testing I plan on seeking out a specialist in PN. I want more than just the basics ruled out.

Can't take Neurontin. Made me suicidal. So I manage with Tramadol and recently added Mirapex. So my symptoms are well under control for now. Yep, been blessed with PN and apparently some RLS thrown in for good measure.

And yes, we do all we can to reduce our symptoms to levels manageable for us. During the day I'm a 1 or less most of the time. Toward 9:00 or 10:00 PM I escalate to about a 4 or 5 before I take a Tramadol. That's much less than my levels were about a year ago when I first found this wonderful message board.
Yes PN is usually bilteral, but sometimes with more severe pain on one side. I am not sure that this asymmetry may not be due to other factors including arthritis. PN often results in slightly disturbed gait which then can lead to a stress-type osteoarthritis with tendosynovitis. I have this on one side which I can control with Ibuprofen.

Certainly one of the most inexplicable syndrome of this disease is the propensity to worsen at night. Also it may have some association with RLS which is why Mirapex may help. Very interesting!!! Thanks for this idea--jarrett622.
I had vague symptoms similar to RLS before I got the full fury of PN. This may also explain why if I have severe burning getting up and walking around often helps. Of course one has to walk with heavily padded slippers on soft carpets.
Also may explain why the symptoms are generally worse at night.

From the forum I noticed that some of us are taking huge doses of Lyrica (up to 600 mg). I would be very cautious with these doses as we not sure of the effects on the brain (memory loss, bizarre thinking, depression etc.). Also I wonder about effects on other parts of the body. I have notice that moderately high doses of Lyrica causes me to have bouts of Bradycardia. Unfortunately I am quite sure that with time other side effects will be identified.
I am sure most us learn how to manage as best as we can and learn to dose our meds for the best and safest effect. That is what chronic diseases are all about -Management!
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