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Old 05-06-2008, 12:08 PM #11
dahlek dahlek is offline
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Default these meds take time

to work...that is the way of it all. Give it a month...by then you will know IF or how it is working or not. Transitioning from one med to another is an art, in my book, by docs... Some are subtle - others not? Also each of us react to each med differently... Strange things us humans?

There are times when I would almost KILL for a pain level of a 4 !!!!!! But I make do with what I have... So. keep in mind that some meds work for some folks...others for others. Keep an open mind and be alert to side effects that are good and bad in terms of the meds you are on. Do NOT be afraid to ask questions -test your docs about what all you are experiencing on any med. I've had some that have turned me into a total ZOMBIE! Granted, there are times when being 'zombie-oid' may be preferable to being a semi-functional human being, but I'm not coming up with many?

BTW? Bob? I might do damage to folks to get a 1! Wow, what a thing to aspire to!

Hugs to all - j
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Old 05-06-2008, 04:45 PM #12
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Default Hi

I always check at the drugstore,I love the way my girls and one young
man ,run too the phone and insist on talking to the Dr.I agree with J. call
the drugstore..Joan I would give anything to be a 2 today.awww Well
good luck to ya cause burning anything just plain hurts Thank
you I feel a little better,but Bob fell in the driveway and his arm is a mess Hugs to all Sue
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Old 05-06-2008, 05:23 PM #13
EarlG EarlG is offline
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Default Lyrica vs Neurontin

Quote:
Originally Posted by groskilly View Post
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, 06:00 PM #14
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Default Lyrica with Gabapentin

Groskilly I agree with your doctor the two do not seem to help in fact after having tried the two together for a week I found that they maybe actually antagonistic. Let me give my view points on this disease peripheral neuropathy. I am a retired physician for many years and I actually retired earlier than planned because of this disorder. Although we feel the pain in the feet the actual disease may actually lie in the brain. The reason I venture that opinion because the sudden episodes of pain are always bilateral. Also because the drugs, gabapentin and lyrica, were really originally developed to control seizures which of course results from firing of cells in the brain. Also many of the side effects are "central" in nature (i.e., in the brain)
Now for treatment. I found that giving a bolus (daily dosage given all at once) seemed to help considerably. There may be a sound biochemical reason for this. By giving a bolus very high blood levels are attained which can then effectively block receptors on the nerve (and brain cells) for a longer period of time. By splitting the daily dosage over 2-3 times a day very high blood levels are never attained since the drug is rapidly cleared from the blood (within 2-4 hours). Now I would recommend this idea only for old veterans like me and then of course only after consultation with your physician. Those of us who have suffered from this disease know that we all search for some satisfatory relief avoiding at all costs using narcotics. Finally I would be amiss if I didn't mention the side effects -- yes dear there are always and always will be side effects to every single medication ever brought to the market. The more dramatic side effects of dizzness, somnolence etc fortunately become less pronounced with time.
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Old 05-06-2008, 06:25 PM #15
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Default

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 05-06-2008, 11:24 PM #16
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Default

Quote:
Originally Posted by EarlG View Post
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 #17
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Default

Quote:
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 #18
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Default

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 #19
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Default

Quote:
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, 06:29 PM #20
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Default Bilateral disease

Quote:
Originally Posted by jarrett622 View Post
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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