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Old 07-29-2013, 04:15 PM #31
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Originally Posted by Marie33 View Post
Hi Doc
Yea you are one of the lucky ones! I take RLA 100 mgs a day for a few months now. (and Lyrica 300mgs) I do not feel a diff with my pain and burning for this sfn!. Thought about increasing it but its expensive and Im afraid a higher dose will make me jittery. What do you take RLA for? You are lucky that its helping and without having to take any meds, I hope you continue to do well with it.
If the RLA isn't helping after this length of time, an increase may, or it just may not help at all, in which case I would discontinue it and save the money. This is the second time you've mentioned the expense of RLA; how much are you paying for how much of it?

As I mentioned, I take it for the burning pain of PN, and it has eliminated that pain completely except for flares that I probably have coming (eating/doing things I shouldn't).

Regarding the Lyrica/pregabalin confusion, many medications are sold both by brand name and generically. Lyrica/pregabalin is now one of those. It is still available by brand name, but the brand name will always be more expensive, and the generic less expensive. It could be that by the end of the year your insurance will no longer pay for the brand name and insist on generic -- I don't know. But if you're going to discontinue because it isn't working, that's kinda moot.

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Old 07-29-2013, 08:28 PM #32
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When do the side effects of Lyrica begin to wear off. I started it 5 days ago and take mgs three times a day. I feel very light headed and if is hard to explain but I feel a little fuzzy. Has anyone taken it long enough for the side effects to wear off? If so how long does it take?
Has anyone taken and gotten good results? For those who did not like Lyrica, can you share why?
Thanks!
I actually called my doctor today to see if I can stop taking it. I've only been taking it a week but that's long enough for me to say enough is enough. Most of my pain occurs in the 10 hours I am at work, I don't see how I can take it twice a day if I am walking into walls and falling all over the place because I feel drunk. I've also had a sore neck for the past few days and most importantly it's doing nothing for the amount of pain I am in. I thought after 2-3 days it would get better but it isn't. I suppose everyone is different but I don't think it's for me. If I can't even take it at work when that's when my pain is at it's peak then I don't see the point.
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Old 07-30-2013, 02:26 AM #33
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Hi Hopeful,
How much lyrica are you taking you left out the amt in your post? I take lyrica too, and still get very light-headed, dizzy like, drunk like feelings that last for a few hours after I take it, I understand how your feeling, its "normal" with this drug ughh. I have been taking it for 7 months now , and I still feel the sideffects, but it was worse for the first three months. Sorry to say its not helping with my pain, I have sfn -idiopathic and I still feel more pain then I should, Doc dosent want to increase my dose he says I should feel better at this "high" dose (300mgs). I tryed taking an extra 25mgs after a 100mg morning dose because my pain was so bad, I was soo dizzy and drunk-like after taking one xtra 25mgs pill! and No the extra pilll didnt help with the pain either! It seems sidefects are bad with each dose increase too.
And to make matters worse, I just thought you should be aware, my hair is starting to fall out. I have noticed in the past few weeks I have more hair in the tub, sink and brush, not bald patches but I see more hair around then usual! I called Phizer *sp and they said its not listed but hair loss has been reported. Sorry, but I just thought you should know. This is freaking me out, I believe its the lyrica, another reason to stop taking it. I know eveyone is diff, so I hope it works better for you. (no weight gain for me) I wish I had more encouraging things to say.
What are you taking lyrica for? Let us know how you do..thanks
Hi Marie,
I take Lyrica for the same thing you do. Idiopathic small fiber neuropathy. I also have been diagnosed with fibromyalgia. I only take 50 mg three times a day.

I'm glad you told me about the hair loss. I want to hear the good and the bad. I think I'll be bald if that happens to me, haha. I already have a lot of hair loss when I wash my hair. I know that is from my thyroid disease.

I'm sorry to hear you have been on it for so long with little results and so many side effects. I tried it once before and stopped it due to depression from it. I wanted to try again since my pain got so bad after I got hit by the car and had a flare up. My neurologist said sometimes an accident can cause a flare up that goes away and sometimes it can start a chain of events that never goes away. Comforting isn't it? So I told him I would try the Lyrica again. I have only been taking it for about 5 days and I really don't like the side effects. I don't feel drunk, just out of it. I don't know if it is too soon to take effect but it has done nothing for the pain so far.

I think I'm just tired of this whole thing. Every now and then this happens to me. I just give into the sadness of all of this. I sometimes long for who I was 6 years ago. The healthy me. The me who worked and exercised and was able to do just about anything. The pain free me. How I'm felling won't last long. I won't let it.

Well I better try to get some sleep or at least watch some TV. Thanks goodness I don't have to be anywhere until 3PM today. Thanks for the info

Last night it put me to sleep right after I took it. Tonight it is 3AM where I live and I am wide awake just feeling really funny. Has it ever made you hyper. I hate trying all of these meds. I am very sensitive to them and usually can't get up to a dose high enough to help the pain due to the side effects being intolerable.

Before the accident I was taking Cymbalta 60mgs and Tramadol 200mgs a day, along with IVIG once a month. I stopped the IVIG before the accident. I wanted to stop it to see if I could do without it because I am sick for 4-5 days after I get the treatments.

I just don't know what to do anymore. I think I have tried every drug out there. I take a lot of the supplements suggested here. Those are what I believe have helped me. One doctor yelled at me that if I don't do anything else she tells me to do I should get off the IVIG. It has severe s/e and there is no research to show what may occur to patients is the future who have had theses Rx's. To put it bluntly she scared the crap out of me. That is mostly why I stopped my Rx's.
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Old 07-30-2013, 02:34 AM #34
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I actually called my doctor today to see if I can stop taking it. I've only been taking it a week but that's long enough for me to say enough is enough. Most of my pain occurs in the 10 hours I am at work, I don't see how I can take it twice a day if I am walking into walls and falling all over the place because I feel drunk. I've also had a sore neck for the past few days and most importantly it's doing nothing for the amount of pain I am in. I thought after 2-3 days it would get better but it isn't. I suppose everyone is different but I don't think it's for me. If I can't even take it at work when that's when my pain is at it's peak then I don't see the point.
Hi Mag,
I am glad to hear I'm not the only one who hasn't been on it long and can't take the s/e. As I said I don't feel drunk but my dose is very low. However, I do feel very wobbly. I knelt down the other day and couldn't keep my balance.

I am on disability now so work is not an issue for me although I wish it were. It took me 6 years before I finally gave in and said I can't do it anymore. I know how I feel on this med I wouldn't be able to work.

I'm thinking about stopping it. Thanks for answering and good luck.
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Old 07-30-2013, 02:40 AM #35
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Part of why is hard to put into words -- even for me! The worst being that it robbed me of my ability to focus/concentrate and create (imagination, applied knowledge). To me, that was most intolerable.

Doc
Hi Doc,
God forbid I should have to focus or concentrate on this. I feel like I already am experiencing memory loss from it.

The more I hear and read about this I don't think I want to continue it. I don't know if it requires weaning off if I have only been taking it for 6 days. I will call my neurologist when I make my final decision.

I am going on vacation on Thrusday for 10 days and I don't want to go in this shape!!
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Old 07-30-2013, 09:02 AM #36
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Of course everyone's different. I stuck it out for the full month requested by my doc, and when I stopped it, I think it had worn of within a week or so, but it was years ago, and I was in a different place (journey-wise).

Doc
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Old 08-01-2013, 09:52 AM #37
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Of course everyone's different. I stuck it out for the full month requested by my doc, and when I stopped it, I think it had worn of within a week or so, but it was years ago, and I was in a different place (journey-wise).

Doc
I stopped it. I think I said I tried it before and did get depression. Well it started again. I was a mess crying, etc. I e-mailed my neuro and he said to stop it. Wow, it was really bad and I am not usually like that.
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