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Skooze 10-21-2005 11:32 PM

What is Lyrica and is better than Neurotin???
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 :)

pwad 10-22-2005 09:23 AM

Re: What is Lyrica and is better than Neurotin???
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!

Sunnycal 10-22-2005 11:13 AM

Re: What is Lyrica and is better than Neurotin???
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.

sharon1030 10-22-2005 06:06 PM

Re: What is Lyrica and is better than Neurotin???
[COLOR=RoyalBlue]Hi Sunny,

I just wanted to wish your husband good luck with the new med. Let us know how he does.

Sharon :)[/COLOR]

cblasingame 10-22-2005 06:37 PM

Re: What is Lyrica and is better than Neurotin???
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 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

redeeminggrace 10-22-2005 09:37 PM

Re: What is Lyrica and is better than Neurotin???
Aloha Skooze,
I am now on Lyrica. I started yesterday and really dont have any side effects yet... As for the Dry mouth, I have a metal flavor ( from the Hydrocodone I suspect )... The burning does goe away for a short while. There are different ranges of 25mg to 300 mg doses's. I am starting low to see the results 50 mg 3 x a day with the hydrocodone. i havent had the blond experience yet and no offence to those of this persuaison (my wife included) but I iwll definatly increase the dosage t get better results. It does work well with the hydrocodone but only lasts about 1 to 2 hours...I hope you get the opportunity to get it. Workers comp takes care of my bills for now but it is pricey in any event...I pray everyone on the board has a painlfree day...Here's wishing so... God Bless.....Bernie Aloha..Mahalo I probably spelled them wrong sorry...

deepsouth 10-23-2005 07:08 AM

Re: What is Lyrica and is better than Neurotin???
This is Robert, Sansy's husband. When we went to Sansy's Dr. this past Tuesday he gave her one a month sample of Lyrica, prescribed methadone (which we filled that day), and she had the stellate ganglion block the next day. I think the block has worn off because the pain did start to return a day or two later, but with the Lyrica and methadone she is a changed person. She has her life back! She is smiling and laughing! She and surrogate daughter Annette are ramming around the house cleaning, doing laundry, straightening up all the hurricane remnants (we are at Katrina ground zero on the Mississippi Coast). I am constantly telling her to slow down, but she feels so good that she just ignores me and keeps going. My only objection is that now that the house is getting clean and straightened up, I can't find anything!

I have to say that I need to watch my attitude. She has completely changed in the last 5 days and I have to change from total caretaker for the last 20 months to a more normal husband role, and that will take some adjustment. All families and caretakers need to be aware of this and take time to think before they act and speak when the patient experiences such a dramatic change. It could actually be somewhat of a psychological letdown to not be so entirely depended upon. I can see how someone (not me, hopefully) could actually become resentful at the patient's new independence. I hope and pray that each and every one of you can find the level of recovery that Sansy has (and that it lasts for her...she says she's going to enjoy every minute as long as it lasts) and that your families' greatest problem will be adjusting to the new you.

Sunnycal 10-23-2005 12:36 PM

Re: What is Lyrica and is better than Neurotin???
Wow, Robert, that is great news about your wife! My husband has been on methadone, and started the Lyrica yesterday. He is getting the "ditzy effect" (thank you, Claire, for warning us), although, since he is not blonde, he says he feels "out of it", rather than ditzy. :)
As the "caretaker spouse", I know exactly what you mean, Robert. It is interesting to have to redefine your role. I hope my husband and I have that problem!! So far, there hasn't been as dramatic a difference, but it has only been one day on the Lyrica. I know about the fine line between taking care and smothering. At one point, my husband said I was too helpful, and he felt that I was giving him the message that he was no longer capable of thinking or doing anything. So I need to be careful about how I approach it, and ask if he wants help, rather than just doing everything.

cblasingame 10-23-2005 12:55 PM

Re: What is Lyrica and is better than Neurotin???
Hi Sunny, Ditzy was the best word I could come up with at the time..but believe me...i know how he feels. It is a feeling that should pass in a few days however and get better with time. If the Dr has ordered an increase, he may get the same lovely feeling all over again. If it works for him as well as it has everyone else, he will be glad to feel "out of it" "ditzy" or however we describe it. It was certainly worth that awful feeling I had. I hope it does show him some improvement. take care...Claire

sharon1030 10-23-2005 05:46 PM

Re: What is Lyrica and is better than Neurotin???
[COLOR=RoyalBlue]Hi Guys,

Robert, that's great news about Sansy! I hope it continues forever!!! I think you have a point about your not wanting her to overdo. It's very easy to do when you're feeling okay so if you don't want to be the one to tell her, tell her I did :). I just don't want her feeling it tomorrow. I don't know how sedentary she's had to be during this time with RSD, but she's bound to feel it if she's been sedentary at all during that time. Congrats again :).

Sharon :)[/COLOR]

Skooze 10-24-2005 08:19 PM

Re: What is Lyrica and is better than Neurotin???
WOW GUYS & GALS>>What an overwhelming, encouraging, promossing replies to my question on Lyrica! Maybe they should have named the drug Euriika! ;)
If it's only been on the market since 9/21 this probably why not all medical professions are on top of it. Hawaii is always the last to get the latest trends etc. I mean after reading Penny's first post, I was so hopeful and after reading everyone elses I'm sold :bouncing: I'm going to schedule an appt. with my daughter's dr. first thing tomorrow, because I know he has samples and he is 5 minutes away vs. 30 miles. Also if Pfizer is the manufacturer, I'm already enrolled in their partners in pain program where I qualify for free meds that they carry. My pharmacy though doesn't carry it, But if they get a prescription they can order it no problem! This is such good news to hopefully, be human and free from the knife! :bouncing: That burning pain.
As far as dry mouth goes, I already drink 5 times 64 ounces of water a day. My kids said if ever we had a huricane, I'd be in deep trouble which made me think of Robert and Sansy cleaning up after Katrina! I'v already started storing empty jugs up in my attic. And very interesting Robert about thee role reversal point. I too was bedridden for 2 years in pain, and my 2 girls took care of me. They were 10 and 14 then. It took alot out of their social life. But since I started my STS machine and stopped using my cane, they were so happy to even be active with their school and friends. So I can relate to Robert what you are going through. Just tell Sansy to take a break every now and then, because if she fell she could be back to square one. And Bernie you spelled those words correctly :) but sounds like you never had the NeROTTEN to compare it too!
Yeah I could be ditsy for a few days, as long as it goes away. You guys are the best. My 18 year daughter is driving me crazy right now since her boyfriend moved back here, and keeps coming over to eat and hangout. Time to give them the ultimatum--RENT! And shut off her cell phone.She hasn't worked any extra shifts since he got here and it hasn't even been a week. I've been taking extra xanax just so I don't stress out and flare up the RSD. Yhanks for all the input. I'm printing this thread and showing it to my doctor tommorrow, :bouncing:
Aloha Skooze

deepsouth 10-25-2005 05:03 AM

Re: What is Lyrica and is better than Neurotin???
Ooooooh, kids, stress and pain. It's like the three musketeers. We're raising our 16 year old granddaughter so I think I know what you mean. Sansy's pain level definitely shoots way up when she stresses, and she has plenty of opportunity to stress. I think we can all benefit from some stress management. I just try to keep things in perspective and not let the little things turn into big things. It works...sometimes.

I wish everyone here a stress-free day.


KarynLR 10-25-2005 07:52 PM

Re: What is Lyrica and is better than Neurotin???
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,

Sunnycal 10-25-2005 08:51 PM

Re: What is Lyrica and is better than Neurotin???
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.

Skooze 10-25-2005 10:40 PM

Re: What is Lyrica and is better than Neurotin???
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:

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