Lyrica questions

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wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Lyrica questions

Post by wantok »

Started on Lyrica 25 mg over a month ago. Worked like a miracle the first night I took it and has since then. Minor side effects. Only is effective for about 10 days before I need to increase the dosage. So now I am at 75 mg and think I will need to increase it to 100 mg very soon.

The back story is I have tried gabapentin to treat my PLMS (I also have RLS but it is secondary) and had to give it up because of depression. Dr. B didn't even think I should try the Lyrica as it would cause depression. It is a general rule that if a medicine can have depression as a side effect, that I will usually get depressed.

So I am in heaven about having my legs be quiet, but anticipating any minute that I will have to give this drug up. Does it work to try and not take it every night maybe? Of course, I won't sleep well/much on those nights. Any other ideas about how to maximize my chances of being able to continue on this drug?

Second question: How nasty is it to get off Lyrica at higher doses? (As most of us, I have had hell to pay when stopping most of the drugs I have tried.)

Thanks in advance. I'm sure there are answers hidden in the many Lyrica posts, but I am being lazy.
Wantok

badnights
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Re: Lyrica questions

Post by badnights »

Hi wantok. I used a similar strategy for a couple of years. I too had bad depression from gabapentin so I was very leery of pregabalin. I started it to help improve my sleep architecture. I was not expecting it to help with WED/RLS symptoms, and it didn't, as far as I could tell. Because of the dangerous depression I'd had with gabapentin, I didn't take the Lyrica every day. For two years I took 75 mg/day for 5 days then didn't take it for 2 days. I didn't experience depression. I had no trouble on my off-days. I think it helped me to sleep better, overall, but the off-days were not consistently worse for sleep.

Last fall I saw Dr B, and we chose to increase the Lyrica dose and take it 7 days a week - but making the changes very slowly (waiting 2-3 months after moving to 7 d/wk, before increasing the dose). This he (and I) figured was better than the risk of augmentation from Neupro. (It should be enlightening to physicians that we understood without any discussion that the lesser of the two evils was the major, potentially suicidal depression.)

You are lucky to have a good response of your WED/RLS to this medication. imo, your best chance to keep it effective for a long time is to take breaks from it as you're thinking of doing. If it's only 10 days before it loses effectiveness, you might want to try 5 days on. I don't know how many off - 2 or 3? At this point, because you're already at 75, maybe longer, to re-set and hopefully reduce back to 25 again. But 25 is a very low dose.

For the off-days, you could take pramipexole or an opioid. A dopamine agonist like pramipexole shouldn't cause a problem with augmentation when taken for only 2-3 days in a row. (imo, though, an opioid would be better. That's just my opinion without any research backing. I don't trust that we know what the dopamine agonists are doing to our bodies, but I understand that emotion played a part in forming that opinion.)

I don't think you will have problems stopping for a few days from that dose, but everyone is different. Good luck with this plan.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica questions

Post by wantok »

Thanks, Beth, for your response. Question: do you know, or does anyone out there know, if I start getting depressed on the Lyrica, is it possible to quit the drug until it is out of my body and then try it again at the lower dose, or will the depression likely start up right away at the lower dose? I know we are all individual, etc. Just wondering if that might happen or be possible.

badnights
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Re: Lyrica questions

Post by badnights »

I'm afraid I don't know the answer to that one.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica questions

Post by wantok »

Well, I'm going to try two nights off. And then go back to 50mg, then 75 mg, then 2 nights off. I do have to take a lot of marijuana to get to sleep so I will tank up on that.

badnights
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Re: Lyrica questions

Post by badnights »

Post how it works. I hope it does.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica questions

Post by wantok »

Bad report: first time I went off for two days was terrible sleep both nights. Took Xanax one night, upped my marijuana the other. Neither worked. Then started Lyrica again. Much shorter effectiveness. 50 mg for 3 nights, then 75 mg for 4, then started feeling moody. Second break much worse. Took Mirapex for one night. Caused insomnia, up all night. Second break night took Lorazepam. Slept like a baby but sedation the next day made that irrelevant. Terrible anxiety caused by this brief withdrawal I am guessing. Back to 75 mg Lyrica. Last night full body shakes ? and anxiety. The marijuana maybe exacerbated it. So I know I can't do this break plan and need to stay on the Lyrica. After experiencing some withdrawal I read up on how difficult withdrawal can be and I am anticipating it and not looking forward to it. One description compared it to benzo withdrawal which I have been through more than once. Obviously I have terrible side effects to almost all medications, some of them paradoxical, as with the Mirapex.

Polar Bear
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Re: Lyrica questions

Post by Polar Bear »

I have read also about how difficult it is to come off Lyrica. I mentioned this to Dr B and he advised that his patients had no trouble coming off Lyrica.

I am taking 200mg Lyrica morning and evening, it helps greatly for the burning neuropathy in my feet and calves, it should also be helping and supporting the codeine that I take for rls. (It is supposed also to help with sleep but doesn't do it for me). Don't want to consider how to wean off it at present, hope I never have to do so.

I wonder when we inter use several medications changing them from one night to the next, to the next....to the next... do we ever really know how a medication is working if it is just for the one night. Some may seem to work, others not so much. But if some meds have a very long half life is it not possible that there are some very weird medical mixes going on in our brains if we change too quickly.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica questions

Post by wantok »

Naturally I would be the exception to the rule of coming off Lyrica easily. (I had a sleep doctor tell me that he had never had anyone have any trouble coming off of Restoril!!--not my experience.) And yes, I agree, the mix of those one-nighters makes determinations difficult. Another reason why a two day test/break isn't a good plan for someone like me who has a lot of deal-breaking side effects.

badnights
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Re: Lyrica questions

Post by badnights »

I'm going to back-track all over here.

After I wrote my initial response to you, about how I'd been doing fine with Lyrica, I slipped into a prolonged depression. I had been slipping for a few weeks, but I thought it was just because I was isolating after overseas travel. Then I thought it was because even after my 2 weeks of isolation ended, my office and gym were closed and I wasn't seeing all the people I used to see.

Then one day, unable to do anything, I recognized the flat deadness I was feeling: it was what I had felt from the gabapentin (but not as bad). I dropped the Lyrica from 150 to 75 that night, and a week later (one night ago) I stopped it completely. I will give it a month to wash out and then re-assess.

What's your history with opioids, anything? Have you been taking iron?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Lyrica questions

Post by Polar Bear »

Beth, sorry to hear that the Lyrica has proved unsuitable and more so that it appears to have caused a depression.
I do hope that a few weeks will bring a positive resuld.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
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Re: Lyrica questions

Post by QyX »

Every time I tried Gabapentin or Lyrica, it shot me into a horrible mood. Luckily I only ever took those drugs for a maximum of one week, so I was able to recover fast (within a week) from it. With those drugs, it seems like they either just work for you and if not, you have a bunch of intolerable side effects.

wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica questions

Post by wantok »

Beth:
Iron: I get iron injections one or two times annually. My ferritin is kept high.
Opiods: I loved methadone. Worked great for sleeping like a baby but even at 5mg I also was totally sedated all day and then serious depression set in. The others mostly alerted me big time unfortunately. Very bad time experimenting with them.
Update: after a really rough time dropping the Lyrica for two days (at 75mg daily to 0) and getting terrible anxiety, primary care doc said don't go on and off of it and increase it when necessary. I went to 100mg/day 3 days ago. Miraculous on my legs and sleep (with marijuana to help) but I am waiting for the depression to set in. We'll see. Maybe I will get really lucky and it will take a while. Not looking forward to withdrawal, should it likely come to that.

badnights
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Re: Lyrica questions

Post by badnights »

wantok wrote:Miraculous on my legs and sleep (with marijuana to help) but I am waiting for the depression to set in. We'll see. Maybe I will get really lucky and it will take a while. Not looking forward to withdrawal, should it likely come to that.
You do seem to be between a rock and a hard spot. I wish there was a simpler answer than all this painful, life-wasting experimentation. Wouldn't it be nice if you didn't get depression from the Lyrica :) .
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

wantok
Posts: 97
Joined: Fri Apr 01, 2016 3:14 pm

Re: Lyrica questions

Post by wantok »

Thank you for your kind thoughts. I am not alone in having these medication issues. It has helped me over the years to think of this community. It has been an immeasurable help to me in so many ways. Had another good night, but only my fourth on 100 mg of lyrica (+ marijuana). My husband sleeps like a baby.

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