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Not getting off Lyrica yet

Jun 01, 2009 - 18 comments
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lyrica

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getting off

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muscles

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shoulders

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pain tracker

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pains

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DLPA



Tried to wean off the Lyrica but probably did too fast so I picked back up to 3 - 25 mg a day and that does it. On less than 75 mg day the nerve pain and spine tingling was nearly unbearable.

Added DLPA 500 mg twice a day and it helps a lot with the muscle pain and stiffness. Allowed me to get a lot of cleaning done with only a little extra soreness in my right shoulder from constantly wiping the wood work.

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by essdipity, Jun 01, 2009
Hi. I had to go back to 100mg twice a day because of nausea, sweating, insomnia, etc. Have now gotten a supply of 25 mg of Lyrica, and tomorrow will start at 175/day, backing off 25 in the morning.

Good luck to you.

ess

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by Khiba, Jun 01, 2009
What a drug, huh? It is very effective for nerve pain, I have to say, and it seems there isn't much else out there besides neurontin that does the same sort of thing.

When I tried to back off, I got very antsy, uncomfortable, and b*tchy. LOL I will stay at 75 mg day for another couple of weeks and then try dropping the night time one as I sleep great. My worst time of day is when the afternoon one wears off before i eat dinner. After dinner things calm down so Hopefully that night one can go. We will see. I really want my brain and vision back and to get rid of the leg swelling. All of these are Lyrica related.

Let me know, Ess, how you come along. I think sneaking off by 25 mg is a great plan, just give it lots of time before stepping down again. I believe slow is best, giving the body a chance to settle. Good luck!

Jessica

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by uk2, Jun 01, 2009
Hi

It took me 6 mths to come down from 600mg a day to nothing the first time i tried to do it in 3 weeks and ended up in alot of pain so much so i added morphine to my meds and still on that now (patch form change every 72 hrs) the next time i did it slowly and although i got the bad pain again after 2 mths things were ok and my head felt like my own again it took me a yr to lose the 2 st i put on by taking it i have not had nerve pain since till this weekend and am thinking i need something to control this pain but i wont go back on lyrica again.

sam

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by Khiba, Jun 01, 2009
Hi Sam!

Good to hear from you!

I was hoping to gain weight on the Lyrica, maybe not 2 st, but 10 lbs would be nice. So far not a pound except water weight at the end of the day.

Glad you put your 2 cents in on how long it took you to get off Lyrica, Ess and I need to follow your lead to wean off slowly. I won't be taking morphine in any form though, since I take LDN and they are not compatible.

Hope you get out of the current pain, girl!

Jessica

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by uk2, Jun 01, 2009
Hi Jessica,

I was on the lyrica for about 3 mths before i put on weight and it was at the higher does 400 mg to 600mg that he weight piled on.

I came off as it messed my head up mentaly caused me mood swings and with the other drugs caused me to have a pycotic episode that and requip just didnt agree with me then again nor does diazapam but at least i can take that when things are bad and not have to wait for it to build up in my system and then decrease when i dont need it lol

take care

sam (excuse my spelling) x

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by Frani65, Jul 06, 2009
Because my insurance coverage came to an end, I hane to get off Lyrica.  I have been on 225 mg daily for th epast 3 years.  My pharmacist told me to stop taking one, for one week, then drop the night time for one week, then go off all together.  It has only been 5 days and the pain is really noticeable.  I use to be on Fentanyl to help with the breakthrough pain, and wanted to get off as many drugs as I could so stopped that and the amitryptiline.  I was on neurontin before the Lyrica and they switched me over when Lyrica came out.  Any suggestions would be helpful.  I have chemo-induced neuropathy.

Frani T.

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by Khiba, Jul 06, 2009
Hi Frani,

I have had a heck of a time trying to get off this drug. Down to one every other day and the bounce back nerve pain (I have transverse myelitis, MS and fibro) is excruciating. I had no trouble getting off tramadol either but this is killer. I am not sure I can leave off the Lyrica and stay sane! I can resume Neurontin I guess, but its not as effective as the lyrica. i don't have much to offer today, Frani. If you find an answer to the neuropathy, please let me know.

Jessica

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by Frani65, Jul 08, 2009
Thanks!   I am working with my pharmacist and he is helping me get off this nasty drug.  You are right, it does help with the nerve pain.   I have had such an awful headache since reducing my dosage, but they suggested taking Aleve or Elavil.  Well, I just finally got off the Elavil (been on it for 5 years, too)  and don't want to go that route either.   The neurontin gave me tics, even at the lowest dosage.    I would be sitting on the couch and my leg would kick out, or my hand would jump up, and  boy was that annoying.   I am going to do the B-12 shot regimen.   Except for the headache and slight nausea, I teel better than yesterday.  One day at a time.  Again, thanks and I do hope you are doing better!

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by Heather3418, Jul 08, 2009
I have rarely heard of anyone that does well with Lyrica.  It seems to have alot of strange side effects and did not help with my nerve pain at all.  When I was on Neurontin, I got up to 3,500 mgs. per day, before my doctor decided it just wasn't working for me.  It was much easier to come off the Neurontin than the Lyrica, but boy am I glad I don't take that stuff anymore.  

What all of this tells me, that my pain is NOT caused from nerve pain.  Thats my opinion and most doctor's do not agree with me.  I seem to do much better with the muscle relaxant group of drugs, since most of my pain seems to come from spasms.

Good luck to anyone that is taking Lyrica that is actually being helped by it.  That drug made me feel pretty awful.  It seems to have that affect with so many people.  I wonder what is in it, that causes all the strange symptoms?

Jessica, I hope the new dosage helps you and relieves some of your suffering.  It's a shame there are so many drugs out there and we can't seem to find one that works well for nerve pain.  Of course, with some people, they swear that Lyrica makes their lives much more bearable.  I would certainly rather take a pill for the symptom, than take a pain pill to mask the symptom.

Hope you feel better soon.

Best Wishes,
Heather
dx with MS in 1995

Hi Sam....I sure have missed you, dearheart.  It's been a long time since we have "talked."  Will send you a PM.  Hugs..


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by Khiba, Jul 08, 2009
Hi Frani, Heather,

Your support notes come at a perfect time!

I have been off the Lyrica 2 days now and am about to crawl out of my skin. I do feel better towards the end of the day though.  I can always take a neurontin if I cannot stand it, but no more nasty Lyrica for me.

Heather, what muscle relaxant(s) do you take? I take half a 5 mg valium twice a day. I want to clear out the Lyrica before trying something else. I find my antihistamine, Atarax, helps a little with the muscle spasms and nerve pain so I alternate that with Valium every few days. But it knocks me out for most of the day.

Frani, one day at a time is exactly right! hang in there, and I hope you can get some relief and get off the stuff as well. Keep posting and let me know how you are coming along. OK?

Sam, Hi, girl how are you doing this summer?
Ess, let me know how your taper goes as well.

I wish there was something that would knock out the pain, leave me clear headed and make my muscles let go and just relax. Seems like my body is one big spasm. Like walking on rocks and sitting on a broomstick!

I think I will take a cup of coffee and see if this head ache will go away. Then a nap, then when I turn into a vampire as the sun goes down, I will get to work! I always feel so much better at night. Why is that? Anyone know?

Cheers all, and thanks for your support. Let me know if I can help any of you, just wait till I get rid of this headache.

Jessica



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by Deborah114, Mar 04, 2010
I have a question. I take 150ml of Lyrica a day for nerve pain - 1 tablet morning and night. I am now experiencing reflux at night so bad I cannot lie down in bed so am not getting much sleep. My doctor today told me to drop the Lyrica completely and when the reflux has gone to slowly build up again 75ml a day for a week and then back up to 150ml. Everything I read says this is harmful to me. What do you think?

Deborah

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by saveone, Mar 04, 2010
Hi Guys, my two cents here.  It works for me to a certain extent then I have to take something from over the counter.  Here is the kicker I experience no side effects, none.  Go figure.  I guess I am one of the lucky ones.

terry

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by Khiba, Mar 04, 2010
I never had reflux from the Lyrica, but I do sleep with my head elevated since I have had a hiatal hernia for years. I got off the Lyrica because it made me brainless and stupid and really didn't help that much. Once I got off it, I realized that the nerve pain was not too bad.

I occasionally take one though if I have had a particularly busy or stressful day and am crawling the walls with nerve tingling and pain, but thats not too often anymore.

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by trish699, May 04, 2010
I've been on Lyrica for nerve pain since jan 20/09. Initially, it helped a lot. My pain guy wanted me to reduce the dose from 75 to 50mg ,due to the fact I itch all over and must take Reactine. He feels it is because i am so sensitive to any drugs, that I responded so well to such a low dose. Due to side effects: high blood pressure, weight gain, edema, dental problems etc., I decided to wean to 25mg. Within 2 days, I had nerve pain in places I never had it- hot poker, even in my feet.( Two nerves were damaged in the pelvic due to an angiogram.) Can anyone tell me if the sudden intensity in pain will abate in time ,or is this my new hell, thanks to Lyrica? Also, would going down 25mg, say once a week at first, ease the pain spike?

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by Khiba, May 04, 2010
Hi Trish,

I had bounce back nerve pain when I stopped. I did wean down slowly. I just waited it out and the pain got better, either that or I got used to it.

Now I take Elavil 5 mg at night sometimes 10 (really low dose) to help me sleep and it knocks out the pain enough that I get 7-8 hours of good sleep.

I still have the nerve pain  but for the most part it is tolerable. But it gets really bad when the barometric pressure drops so I occasionally take 25 mg of Lyrica as needed if I just am coming unglued with the pain.


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by smiley33, May 08, 2010
Hi, Leroy in Sligo Irelnd here. I have scoliosis and a kyphosis. Its got to the stage where i cant move without pain.The pain is there 24/7 so i started taking lyrica. It worked from the first cap and after the week of walking around drunk i feel good. The only prob is im lost because everything i do is a blur and when i turn my head i have to wait for my eyes to follow.That said i look forward to sergury so i can get off them. They are not a good thing to take if there not the last hope! See what i mean i dont know if my spelling is right. Anyway good look to everyone in pain, i feel for you all.

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by AnnieOB, May 14, 2010
Hi all - I'm a 57 year old female, and I've been on 150 mg of Lyrica daily, for three years for Relapsing Remitting MS.  I've only in the last couple of months, increased that dosage to 300 mg a day....it definitely helps with the nerve pain, except on the lower dosage, it stopped working. It started to feel like the nerves had come to live on the surface of my skin.  I also have back and neck problems with herniated discs involved.  Two things I have noticed with the Lyrica - 1. I've put on weight, especially around the waistline, since being on the higher dosage. (don't like this at all!) 2. I tried to wean myself off the lower dosage about six months ago...cold turkey.  Well, it was like I had the worst withdrawal symptoms.....panic attacks, tachycardia, dropped into depression, which is so not me...and the pain!  Only handled it for a few days and went back on.  Can't be good for you, but as everyone who suffers with any sort of pain says....when it comes to choices, what do you choose?  

Oh, I should mention, I also have Graves disease......some of these symptoms: fatigue, muscle pain, eye problems all overlap with the MS.  I've dodged surgery for that for a few years, but it's come down to the line and the thyroid goes next month.  I figure at least then I will only be dealing with the MS and won't be wondering whether my symptoms are from the thyroid or MS.  Once I've had the surgery, I would like to try weaning off the Lyrica but I will need something for the pain- any suggestions as to what else I could try.  I take Mersyndol a few times a week for the headaches and find it very effective in helping other pain in my body......At the present time, I've had 10 hours sleep in 6 days.....not fun, hence my reason for  going online.....Thanks for any help guys!

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by Robinokc, Jan 23, 2014
Cutting back 150mg of Lyrica after 13 months. It was prescribed for upper arm neuropathy after cervical fusion. Dr stepped me down to 100mg. I now have insomnia which understand but now GERD is bad. It has been well controlled for 15 yrs. anyone had this problem?  

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