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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I need some help. I'm having side effects from the Lyrica.........horrible swelling of my legs & feet, headaches, eye & lip twitching. Not a fun experience.

I hope anyone who's been on it would share their experiences in detail. I'm begining to feel nuts

JudieV:confused:
Judie,

You are definately not nuts. I had the same things from Lyrica. More swelling than usual, bad headaches, and bad dizziness (which led to weird eyesight, and some twitching), but I wanted to give it a chance because that was something that was tried relatively early. I was only on it for maybe a month, enough time to see if it was working (which it wasn't) and then I was done with it. I hope that despite the crazy side effects it is helping you in some way. Wishing you a low-pain day!

Smile
Hi judie...I also took Lyrica...I was so excited to start taking it...just knowing it was the new drug out there for RSD. Well it didn't work out for me....my blood pressure shot up sky high....gained tons of weight...I tried longer hoping the side effects would go away....but my blood pressure was just getting scary high...so had to quit it.

Judie it just isn't for all of us. But don't give up hope. The Dr's will find something that helps us. I truley do believe it. Keep us posted on how you are doing on it.
Hi All,
I have been on Lyrica for about a year and has not noticed much side effects. I suppose we all have different reaction to diff drugs.
Anita
It really works for me. Keeps the pain at about a 4 to 5. I've been on it since the middle of April. The lower doses do not have many side effects..........when the dose goes up..........the swelling blossems, and it hurts! My skin has lost it's stretch from the RSD, so I look like a piece of balloon art. I also notice strange "tingling" sensations on the tip of my tongue, my whole body feels swollen.

Thank God the doc lets me move the dosage around. I taks 150mg in the am and can either take 75 or the 150mg at night. I can't go any higher than that or the side effects lay me flat. I don't want to come off it because I'm scared. In 14 years it's the only thing thats helped.


JudieV
I have been taking the Lyrica since I was dx in June. It has worked for me. Was originally taking 75mg twice a day which helped a little and now am taking 75mg three times a day and it is really helping. I have noticed one thing. If I take too late at night it keeps me awake if I wake in the night for any reason. So I try to take them am, lunch and dinner. I'm afraid to go off it too!! I am feeling sooo much better now that I'm afraid if I go off it will backfire on me. went to doc yesterday and unfortunatly he had an emergency so I only saw the PA. If this guy says "Are you sure it's not hot flashes" to me one more time I am going to kick him with my good leg. I told him about the sweats I've been having and thats what he says. I explained to him that I had a total hysterectomy in 1987 and I know the difference between sweats and hot flashes. Oh well starting to ramble. Have a great rest of the day all.
Cathy
I have been taking Lyrica over a year for nerve pain related to a primary headache (Hemicrania Continua) and it has worked for me. I haven't had a headache for three months now, but if I did, I'm to take Indocin. I'm up to 200mg twice a day, and will go no higher. My headaches were severe, one-sided, and lasted ten to fourteen days, sometimes longer, with only a few days inbetween. I think the Lyrica has helped my other pains too... severe back issues and trauma arthritis in an ankle, broken two years ago. No side effects I can't live with.
I took Lyrica for 2 months, as a trial, and the only side effect I had was some lightheadedness and slight dizziness for 5 days then when I went up to 2 a day that came back again for about 5 or 6 days again and then I was ok. It took away my night sweats and the only time I dealt with it was at "that time of month" but even that was seriously downgraded from what it had been before. The electrical zapping, which was way worse when I woke up and had been sweating was almost nil, tamped down so much it wasn't painful at all just a tad annoying if I did feel anything. The numbness in my legs was also greatly decreased!

At least my doc and I know that this works for me when nothing else has. I've been on every antidepressant, neurontin and cymbalta all with horrible side effects, specifically my moods. I was a monster on all of these. Unfortunately I can't afford to buy lyrica and that is why it was more of a "trial run" these past 2 months. I can only hope, really hard, that one day soon i can afford it somehow and when I go back to the doc in Oct, get a real scrip for it.

I'm sorry for all of you that had such horrible side effects from it and hope that you'll find a drug that does work for you. *hugs*

Hugs,

Karen
Karen, where do you live?

My neurologist, who prescribed the Lyrica, has a lot of samples and asked if I had any trouble with my insurance to get it... fortunately I can get it, though expensive. So if I were you, ask him/her for enough samples to get you through. Good luck!
Mary
I live in Florida. I was just at the doc on Tuesday and the few samples she had given me at my last appointment 3 months ago were all that they had. It was 6 bottle of 30 pills. She says they just wait for the company to send the more samples but from what she said it's not on a regular basis. I still have 2 bottles from the last time and she told me to hold on to them and as soon as she got any more samples she would call me up and give them to me.

Obviously I can't take the med on a regular basis not knowing when I'll have them or not since they never know how many samples they'll get nor when they'll get them in. I can't keep stopping and starting taking it. I hate not having enough money to take care of my needs.

Hugs,

Karen
Karen,
I use to work for a drs office before I got RSD. Your DR can call the Reps if he really wanted to.. We use to call all the time and tell them if we needed more of something. Just a thought..
Michelle 1
Karen,

I'm so sorry your having problems getting your Lyrica. Have you tried contacting PFIZER...........the manufacturer. Alot of the drug companies help people that can't afford. I've also saw a ad on tV for a organization that helpspeople get their meds. I'll post the name the next time I see it.

Lyrica helpsme too. Only I get lots of side effects. I'm managing. I won't give up the Lyrica,

Judie
Their website was the first I went to. I've looked into getting the med and I don't qualify for anything at all. Hubby makes $1,018 too much for me to get it free from the company and there is no other program that would help me get it low cost.

It sucks but we're a class of working poor. We don't qualify for any help from anyone but yet we live from paycheck to paycheck and we don't have enough money to make it. All I hear is he makes too much money. My question is, then why can we barely pay the bills then? If he makes so much money why do we keep struggling? Having to pay a doc and meds just makes it worse!

National Health Care would be so much better because then no one would lack proper health care and meds they need. We could get preventative health care instead of dying from something that if caught early wouldn't have become a death sentence. That is another thing that I deal with because I can't afford to go to a doc for "female" stuff and I was literally days away from getting full blown cervical cancer that time. It runs in my family, problems like that. I worry but what can I do when we are told, he makes too much money?

Ah well, I tend to rant on this subject a lot. I don't qualify for disability, SSI (again, makes too much $$). The only SS thing for me, Survivor Benefits. Well, I'm not ready to die yet and the measly amount they'd pay my child and spouse isn't worth me dying anytime soon! LOLOL To get medicare in my 60's I'd have to pay for it because I don't qualify for it either. Yeah right, how can I pay for that?! Hubby has to retire someday.

I've accepted the way things are and can only hope I can afford it one day. I don't know how much it actually costs, but considering someone I know pays $43 for her share WITH insurance, tells me that at 3 pills a day for a month, one month would most likely cost well over $100.

Hugs,

Karen
I would suggest not resorting to Lyrica. I went on it to keep from having to take narcotics for severe pain and muscle spasms. I lucked out and found a doctor that is now treating me for an auto-immune disorder instead of throwing drugs at the symptoms.

The biggest two problems with Lyrica (especially if you don't have insurance, I don't) are that it costs between $150-200 per month and it's so addictive that I equate going off of it similar to going off methadone which they had me on for severe pain at once. The withdrawal was worse than any narcotic they had me on.

My suggestion would be to find a doctor that treats the whole body instead of the symptoms. By the time I found one that is an M.D. with a second degree in Holistic Medicine, every system in my body was starting to shut down.

I got relief of some of my more severe symptoms within 8 days. However, if you decide to check any of these doctors, call and ask their rates, some of them are $1,000/visit. Shop around.
i just thought i would throw this in here. i have had a lot of experience with the gaba analogs, and never truely had side effects or problems with them. but one night was different. i drank one beer that night with my 150 mg's of lyrics (doc said it would probably be fine, as i have done this before a bunch of times.) and a couple hours later my hands and face swelled up like a balloon. i passed out and was taken to the emergency room where i became less and less responsive. i was officialy thrown into a vegetative state for a full 12 hours. i didnt respond to any type of stimuli. my breathing and heart rate slowed down to dangerous levels. they had to give me meds to speed my heart back up, and were about to put a breathing tube down my throat, when i woke up to a doctor opening my mouth. my whole family was staneding around me crying. they didnt know if i was ever gonna wake up again. i have no memory of that whole day, and even worse, it was my 17th birthday. anybody ever heard of this happening? im confident i wouldve been in an official coma if my dosage was even 25 mg's higher.
that night hurt me soooooo bad. i could'nt even imagine how much pain my family went through.
everyone seems to be different when it comes to the lyrica. i took it for several months and will never take it again. i was experiencing the same problems as you judie. BUT IF ANYONE DECIDES TO QUIT TAKING IT I BEG YOU TO DO IT VERY VERY VERY SLOWLY!!!!!! my doctor tried to take me off of it completely in about a month and i swear it was one of the worst times in my life! I had cold sweats like you wouldnt believe. i pretty much lost 4 months of my life due to all the complications from coming off the lyrica so quickly. so please be very careful!
Amber





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