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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Aloha everyone! A Friday night and we are all finding solace in this board! Funny 9 years ago I'd be planning to out. I'm only saying this, because my 18 year old daughter, who just got out of rehab, had her Love of her life move back here from Chicago, and they are climbing the walls with nothing to do. Made me think of the the pre- RSD days! ;)
Anyhow I've been reading about the new drug Lyrcia ( spelling?) on this board and when I asked my doctor she never heard of it, and she's only 33, but knows RSD. Her speciality is diabetes. Anyhow when I saw my daughter's dr. I asked him, and he knew all of it, and has prescribed it to patients with shingles, and neuropathy, and diabetic pain patients. I was shocked that he was so knowlegeable. I thought maybe it wasn't approved for the US. So my question is is anyone taking it, that had been on NeROTTIN (Neurontin) and does it have the same side effects. When I was on Neurontin, I never walked into so many walls or felt like I couldn't think, or I'd be driving and forget where I was going!! :dizzy: Yes I was one dizzy blonde!
My daughter's dr. said it works for nerve pain and it would be worth trying for my RSD. Makes me wanna think about switching Dr's, too. So all you fellow RSD'rs, has any of you tried the two drugs? Are the side efects the same? Does it work on nerve pain? The stabbing , burning, knife-like pain that never goes away? Any input would be great. Hope all of you at least reminisced for a second of what it was like to be 18 on a Friday night! LOL Aloha Skooze :)
Lyrica is a new drug, made by the same people as neurontin, that was developed with nerve pain in mind. I was on neurontin for about one year. I like you felt scatter brained and deeply depressed. I was also in a great deal of pain while taking 1800 mg of neurontin. The doctors wouldn't go any higher because of the side effects. I felt doomed. My GP told me to go and see one of his neurologist friend and if she couldn't help he was going to send me packing half way across the nation to find help. I must say that I almost didn't go to the appointment. I didn't think I could emotionally endure another doctor telling me they couldn't help me, but my husband made me go anyway. She suggested Lyrica. Telling me it was "worth a shot."

She gave me samples or I might have just brushed off the advice. Two days after being on Lyrica I began to see light. That is the only way I know how to describe the lifting of the great depression I was in. Within a week I was feeling some pain relief. I have been on Lyrica for 3 1/2 weeks. I feel better than I have since my surgery that led to RSD seventeen months ago. I went to see a high school football game last night just because I wanted to get out. Before I only got out when duty called. I will not say that all pain is gone, but it has been decreased so greatly that I feel I have been freed from the prision of RSD. I am hopeful that I will continue to improve and go into remission.

I can't say what this drug will do for others, but I hope that some will experience the relief I have found. My only noticable side effect is dry mouth. I will take that any day over the pain that plagued me. The reason your doctor may not have heard about the drug is because it only became available on September 21st of this year. Hope this helps!
penny
On Wednesday, we asked my husband's doctor about Lyrica, thanks to the people on this board. He said that he has already tried it on some of his paitients and some are getting better relief. My husband is going to switch from the Neurontin to it, and see if it makes any difference. Because of the "ditzy" effects that some of you have talked about, he is waiting until today when I am home!
By the way, the doctor has gotten the Myobloc (Botox-like drug) in his office to try injecting, but he did not want to do two new things at once. He gave my husband the choice of which to try first. Because several of you have had good luck with Lyrica, my husband wanted to try it first. Thank you so much. So we will slowly switch over to the Lyrica this month and then try the Myobloc next.
Sunny
Skooze, I think i was probably one of the first on the board to try Lyrica...I too was on the neurontin...and for the horrid side affects couldnt take it....Ive been pn lyrica about a month and a half...have notice a dramatic and i mean DRAMATIC reduction in the burning stabbing pain we all love so much. Lyrica is also an anti-sezieure and works totally different than nuerontin tho. As my doc described...the reason its so affective, it works directly through the spine, is also give for those with diabetic neuropathy as well as sezuires. Its been an amazing savior for me as I was ust coming off methadone and noticed a huge increase in the burning, stabbing pain. My Dr had just went to a conference on Lyrica and almost had it in hand as I went to see her. If given the chance Skooze, certainly give it a try. I will tell you.. I was very ditzy for about 3 days...it went away though and only returned with the increase and then again went away. It is pretty pricey though, i hope you have medical insurance to help. ( you know how those drug companys are). Anyway, theres my input...Lyrica is an awesome drug for the burning stabbing pain...give it a try and good luck to you....Claire
Can anyone desribe the "ditzy" feeling when switching from Neurontin to Lyrica? I am finally sitting down at my laptop and trying to sort through the nerve pain meds... A few years ago a podiatrist severed my lateral plantar nerve in my right foot (lawsuit pending) and two surgeries later (3 months post op on the most recent one), we have removed part of the tibial nerve, but are still taking meds until the nerve pain "calms down".

A couple questions--how did your doc decrease the Neurontin and increase the Lyrica? How long did that take? Also, what helps the ditzy feeling and how long does it last. When I increase the Neurontin, I feel very tired for the time of the increase, but it helps when I keep myself busy--but take a nap when I need it. I am a grad student and want to make the best choice to make a med switch timewise... Could I start it on a Friday? Over Thanksgiving?

Thanks for the help,
Karyn
My husband was taking Neurontin three times a day. The doctor cut the dose in 1/2 to 200, 300, 300, and put 50 mg of Lyrica in addition at each time. This is for one week. Then next week, he will stop the Neurontin entirely and take 100 mg of Lyrica 3X a day. My husband says that the burning pain is definitely better. The stabbing pain is still bad, even worse because of the weather change.
He had the side effects for 2 days--lightheaded, slight loss of balance, not totally with it (ditzy), and sleepy. He would not recommend driving during that time. A three-day weekend should be enough. He started Saturday, and was driving on Monday.
Hope this helps.
Sunny
Aloha Karyn! I think Sunny answered your question about the tapering off part the best. I've been off NeROTTON for over a year, yet I still sometimes have what I call a NeROTTEN hangover. It's not as bad as it was a year ago, but I did not have a replacement drug to calm the burning, stabbing, knife-like nerve pain that us RSD'rs experience. I was pretty tired all the time, incoherent, not know where I was going, or losing my thought in mid sentence. Like I was drunk 24/7.Or like being a dizzy dumb blonde. Ditsy>>is dizzy times three :D It took me a good 6 months to overcome the drug and they had me on 600 mg. times 5 a day. As most RSD'rs, we are desperate to try anything. I think it's great that you can decrease the Neurontin and take Lyrica at the same time. Almost makes you wonder what they will come up with next.
If Sunny said her husband switched right away--I would go that route. Once you stop the Neurontin, you might even have more energy. I read somewhere that 10% of the population with RSD have type A personalities. I'm a type A and that's why my lawsuit took so long to prove to the work comp people that I had RSD said my attorney. Sounds like you are also a type A, and I wish you the best in your studies and endeavors. Just remember the less invasive of a procedure you have done, is more better because of the risks involved outweigh the procedure. I wish you luck. Aloha Skooze :angel:
It's interesting that everyone has different instructions from their docs--that just surprises me! I saw my OS today and we had a good talk. He said he called his Lyrica drug rep specifically about me, and they thought this would be a good change from 1200 mg daily of Neurontin. It is more effective, is more readily absorbed, and in studies, while side effects are similar to Neurontin, people are more able to tolerate this drug.

Since we decided to go ahead, he had the cast tech call his drug rep, who said I should stop taking the Neurontin cold turkey, allow my body a 7-day "cleansing" of no nerve pain drugs, and then start right into the 3 daily doses of Lyrica. My doc wasn't happy with that (neither was I frankly), and told me cut down the Neurontin over a week or two, do the week cleansing, and then start with the Lyrica.

Hopefully it will help, and I feel that I will be closely followed because it appears that I am his guinea pig :) Will let you know how I feel after I've started!
I started on Lycria two weeks ago, only 75 mg a day, and the first day I had no pain until about 4:00 p.m., but I misunderstood my doctors instructions and stopped taking the Neurontin and Clonazepam all together. The second day, I so much pain that I took 300 Neurontin and one Clonazepam - usually take six. Next day had to take 600 Neurtonin and two Clonazepam. Then after six days I woke up and was so dizzy I could hardly stand. Went to doctor right away. He said he thought it ws because I cut back the Clonazepam too quickly. He said I should take 75 mg Lyrica for two more days and 3/4 of my usual dosage of other drugs. Then take 150 Lyrica and cut to half of my other drugs. After two weeks, we will analyze the situation. Have done that today and am not dizzy. We shall see. Laura.
First I want to say, I am so glad that there is a sight for RSD/CRPS available. When I was diagnosed with it in May of '05, the devastation was incredible, not to mention the pain. I went throught this (and was also on the Neurontin...made me gain weight and I was very sick all the time) and then my shoulder began to hurt again. Two shoulder surgeries were the apparent culprit of my RSD in my right arm. I had another open-shoulder surgery and they removed a large bone spur in October. I haven't had any arm pain, stabbing or burning since. Perhaps I was mis-diagnosed? Any thoughts on this from anyone? After all the 'stellate ganglion block' injections I had to have, it's frustrating, however, if it was a false diagnosis, how would I know?
Thanks for any advice anyone would have for me. ~sleepyinIA
Hello there peoples,
Our experiences with the two drugs depend on the individual. I had the runs on neurontin and didnt with Lyrica, but the memory ditzy thing is worse on the lyrica with me! BUt it is the only side effect, I have to think harder! LOL I am studying at Uni whilst on this!!! Yes the memory thing does not help! Especially when your only 25 and trying to make a living!
JUst remember some people react differently to different drugs. I went from 3600mg Neurontin a day to 600mg of Lyrica a day. (Both max doses) this is the only drug besides Trental I can tolerate, tried the opiod patches and I vomited very muchly and slept for about 36 hours!
Glad to see some one enjoying some relief!

Mel
[QUOTE=melgus]Hello there peoples,
Our experiences with the two drugs depend on the individual. I had the runs on neurontin and didnt with Lyrica, but the memory ditzy thing is worse on the lyrica with me! BUt it is the only side effect, I have to think harder! LOL I am studying at Uni whilst on this!!! Yes the memory thing does not help! Especially when your only 25 and trying to make a living!
JUst remember some people react differently to different drugs. I went from 3600mg Neurontin a day to 600mg of Lyrica a day. (Both max doses) this is the only drug besides Trental I can tolerate, tried the opiod patches and I vomited very muchly and slept for about 36 hours!
Glad to see some one enjoying some relief!

Mel[/QUOTE]
[B]Hmmm. So you had better results on Lyrica. That's interesting. When I ran Lyrica by docs they said that it is in the form of Neurotten. So with that in mind, I told them no way b/c I don't want to go through hell again. I guess all body types are different.[/B]
I don't know whether it is stated somewhere above this level but I learned that the difference in Lyrica and Neurontin is that Lyrica operates at the Spinal level, preventing pain messages from getting to the brain. I guess you could say it operates a little like a block. I am only on 225 mg and it has done more for me than 6 mg of Clonmazepam and 900 Neurontin. First two weeks I was very dizzy but that was partly because I stopped taking the Clonmazepam all together and one cannot just cut oneself off that type of drug like that. At this level, no dizziness. Whether memory is worse is a point to consider since I have been on so many drugs so long who knows what my memory would be like without them??? :jester:
Hi JoyI And Welcome to the boards. Please check out the post by Warmnsunny--Looks like that they are having opposite effect. Although I guess it all has to do with age, menopausaul, etc..... Lyrica is still new out there, and my PCP, who specializes in diabetes, was against me trying the drug out when I posted the thread is Lyrica better than Neurontin! But I'm hypoglycemic too! I hope that someone can answer your question. Good Luck Skooze :)
I have been on neurontin for 10 years for RSD and I have never had any of those feelings you all describe. My Doc did say that neurontin in combination with any other type of drug will intensiy the other drugs effect mainly any pain meds.I am only on 100 mg 3 x aday though.Elival also has helped a great deal with the pain.





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