Lyrica?

[Luv2Worship]

I've been on Lyrica for almost 4yrs now. I take 225mg 2x daily & the only time I have any reactions is when I get lazy & forget to take it!! Long story but my pain mgmt dr. office messed up my appt. last month & I went off ALL my meds (Lyrica, soma, norco & cylexa) cold turkey for a week!! My dr, is so frustrated with how the office is managed! I could have serious withdrawal issues! Thank God nothing happened!!

[Hawkgirl]

Luv2worship, we are both on the same amount of Lyrica, 450 a day, right? It's interesting to me that medication affects people differently.

derrie, I still have shakey hands, but not jerking or twitching. (Unless I start thinking about twitching, and then I start twitching. Don't think about it, don't think about it! ) I don't have a rash, either. The rash makes me think of an allergic reaction; does Benedryl help?

Lyrica can't overcome my stress this holiday season. I think I'll just let go and ride the wind and see what happens. I like to make the holidays really special (for the kids to have good memories of happy Thanksgivings and Christmases and birthdays), and I have inherited a combination of perfectionism and laziness from my parents ... it's interesting to observe how those things rub against each other.

So to conclude (I'm getting a little out there), still shakey hands and "rush," no jerking or twitching, no rash. Pain from hug is coming back, no doubt because of stress from the holidays.

Here's hoping that Jan. 2 it will drop down again, because Lyrica was killing it down so well, and I have tasted the sweet nectar of no pain, and now I want it back! It's too ironic that when your pain is gone, you hardly notice and appreciate it. You forget that you've been in agony for almost 2 years. Strange, sad, wonderful.

[dmcmtk]

Alpha Lipoic Acid

Hawkgirl, did you ask your neuro about ALA? As I said in my previous post, the combination of ALA and Lyrica has been very sucessful for me. I'm down to 150mg-200mg of Lyrica a day with 1200mg-1800mg ALA a day.

I really don't think there is much downside for you to try it. I had neuro appt. 11/1 and my doctor was of the same opinion, as was my PCP. At the highest I was taking 450mg of Lyrica a day, and though my side effects were not as various as yours, they were definitely there. ALA is an over the counter "supplement" and quite inexpensive. Perhaps worth a try? Godspeed.

[Hawkgirl]

Thank you dmcmtk, I will research that.

Further tales of Lyrica lunacy: I have finally found others who have experienced the "swelling" or "distended abdomen" that I've been asking about. So that is a real thing. I noticed on Saturday I was sporting an enormous pot belly. It truly looked like I was about 5 months pregnant. Butt, hips, thighs all normal. Big pot belly. So I had to go on a frantic search of the stores to get pants that would fit me for Sunday, because none of my pants fit.

I have some "yoga" type pants that I wear a lot, and one pair of jeans that are such low riders that they button *under* the gut. So I found some pants Saturday that fit me with my huge pot belly.

Well. Today the pot belly is diminished to almost normal size. I did not have an enormous BM between then and now either. There seems to be no explanation. My pants still don't fit because I *have* put on some weight, but that strange large pot belly seems to be gone. Was it gas? Water retention? So strange.

[Hawkgirl]

I'm going to bump this yet again. My life would be so much cheaper without Lyrica. My insurance has finally hit the wall and doesn't want to pay for any more of it. As of this January I will be on Medicare D and it will be super expensive to be on Lyrica. Their "pharmacy helper" suggests Neurontin as a substitute. I've already been on Neurontin and didn't find that it helped. Was I not taking enough, or did I not give it enough time? Does it slowly build up in your system, or should you have immediate results? These are the questions I should be asking my pharmacist. I guess I'll print this out so I remember to ask.

I don't know if Lyrica is even helping anymore. The pain is there, not as bad as before, but still a 5 or 6 maybe. Is the Lyrica holding it off, or has it "healed"? And stress makes it worse. And here I am, stressing out. And my dirty cuss mouth that I want so much not to have is wanting to emerge.

I totally lost it last night. It was my anniversary with DH, #14. We had our real celebration on Saturday night, when we went out to a fancy dinner and spent the night at a fancy hotel. One night away from the kids. But last night I cooked DH's favorite supper. But the stupid kids were driving me nuts, and then DH came home and immediately started playing with his early Christmas toy (a little pad computer thing) and not noticing anything around him, while I was clanking around with the dishes and setting the table by myself, and there sat my supper, with the dishes on the table, and no one would come sit down even though I asked nicely ... and I LOST IT. The eff word was flying everywhere. I was cursing the kids and the hubby like a sailor on leave. STRESS. and my HUG was really nailing me. Anytime things are rough, the HUG likes to add on. It's like an evil demon.

Anyway. I'm waiting for a call. I can't wait here all morning; I have some grocery shopping to do and my daughter's b-day is tomorrow. *sigh* Just breathe. And put on some real clothes.

[annette]

Quitting Treatment

Has anyone ever considered quitting treatment?

[Hawkgirl]

annette, I understand from what I've read that Lyrica withdrawal can be dangerous, and you have to step down. And maybe I should step down.

What I know 100% is that if I had to live with the pain I was having for 18 months, I will put a bullet in my head. That was unbearable pain. I have tried Mobic, Neurontin, Clonadabeneze (some sort of muscle relaxer), Zanaflex, Nortriptyline (still taking this), Zoloft ... nothing could touch the pain from the MS hug. I did a hefty course of IV steroid and it did not help at all.

And now even Lyrica, my beloved Lyrica, is letting the pain through. I can feel it right now, starting at my spine, creeping around, joining hands in the front to squeeze squeeze squeeze as hard as it can. Why does my body hate me? HA. Well, feeling's mutual. We've never been friends, and I think it's been trying to kill me for years. But she doesn't know; I will beat her to the punch if she forces it.

Insurance will cover Lyrica if I do it through their special mail-order pharmacy. Trouble is I won't get the meds for 8 days. 8 days. December 7. Or do you think they meant business days? I'll bet you an egg at Easter that's what they meant. December 12. Lord please give me strength and relief.

[derrie]

Hawkgirl--

I, too, am struggling with getting my Lyrica pre-authorized, and then I have to get it through mail-order, and I know from experience that my insurance's mail-order pharmacy is slo-o-o-ow (I get my thyroid meds through there, too).

Can your doctor give you sample while you wait for the Lyrica to come in the mail? That is what my doctor is doing. I go get another sample bottle about once a week to tide me over (I was using samples for a while to figure out what dose worked, before we did the regular prescription).

Oh, also, the jerking I'm having is just ridiculous. It comes out of nowhere. I'll be sitting, and then my leg will kick out suddenly. I'll be using a mouse, and my arm randomly jerks and the mouse goes flying off the mouse pad. The pain relief, though, while not complete, is good enough that I want to just live with the jerking. But it is truly obnoxious.

I think even though some pain comes through, I'm not going to quit Lyrica because I bet the pain would be so much worse without it. Have you tried tramadol? I take that some days for breakthrough pain, and it helps.

Oh, and the rash on my face? Still there, but my doctor assures me it's not related to the Lyrica. I'm seeing my PCP about it because it's sort of unattractive, and I am young and single. I mean, who wants to date a woman with a bright red face and randomly jerking limbs? I'll at least get rid of the rash.

[seeuinct]

Hawkgirl- I am so sorry you are going though this. You sound like you really need someone to help you get rid of the pain you experience so you can have a good quality of life.

I am no expert- really I am just a newbie- I dont have pain, right now I mils symptoms. I realize this will change over the course of this disease.
I just watched the Dr. Oz show with Montel Williams (you can YouTube it). Montel talks about living with pain. He was chocking up about it! You could tell this pain effcted all parts of his life. He smokes medical marijuana everyday now.

I am not saying this is what you should do, but he says that he can be a functioning member of society bc of this drug. I don't know your stance on this...but I thought I would throw it out there because you sound like you are at the end of your rope.
I hope you find answers and help for your pain. ((hugs))

[Hawkgirl]

derrie, I *think* my insurance will cover it if I do mail-order, and for some reason all my scrips are paid for (met the deductible?), so they will reimburse me for the stuff I bought today at full price. I got several days worth, to tide me over.

seeuinct, I have seriously considered medical marajuana (sp?). I have found my old and current neuro to be somewhat resistant to it. Also I had a big fight with DH this morning because he thinks I'm addicted to Lyrica and that it has changed my personality.

And there is the rub. I am still so worried that he has grown so accustomed to the depressed and in-pain person I have been for so long, and the happy me who likes things and gets excited about things and is enjoying life--that person he doesn't seem to like. And the scary part is that we met and I was dx'd with MS at the same time. I'd had a serious attack and was dx'd right away. All the time DH has known me, I've been sick and depressed. The horrendous pain did not start until March 2010, but the sadness and constant health issues have been going on for our whole married life. What if he doesn't know who I really am? What if he doesn't *like* who I really am?

Anyway, I spoke with the pharmacist and he told me that Lyrica works on the brain chemistry and changes how the brain perceives pain. But it is non-narcotic and does not impair judgement in the same way marijuana (?) does. Because I asked the pharmacist about MM. The pharmacist thinks Lyrica is a really good med for people with nerve pain. So I'm going to slap that in DH's face when he comes home. Then we will fight some more and go to bed angry, and tomorrow I won't remember why he's mad at me. And in another day or two it will go away.

derrie, I haven't had a rash but two days last week I suddenly got very flushed in my face, esp. nose and cheeks. I wouldn't call it a rash because the skin felt smooth and normal, but I was just very flushed. But that just happened for a while for two different days. It hasn't been continuous. And I have not had the jerking.

For me, still, it's mostly being extra talkative and ADD-ish. And IMO that's a small price to pay for relief from the pain.

[derrie]

Hawkgirl, I have the pot belly now! It doesn't seem to be fat or weight gain, just a newly firm and round belly. Like my formerly flat belly has just expanded. It's sort of awkward.

I just wanted to share. I don't like my pot belly at all, but at least I am in good company.

The jerking continues; my neurologist's nurse seemed a little concerned when I reported it, but no way in the world am I quitting Lyrica over some jerking limbs. I'm still in some pain, but the pain is so diminished, I can't imagine going back to being fully in pain again.

[Hawkgirl]

^ That might be why my DH thinks I'm "addicted." I make a big effort not to miss a dose. I guess I am addicted to having a lot less pain. Who would blame me? Being in pain all the time is a misery.

In my family, on one side are the stoics who would think it's shameful and weak to show you're in pain. You suck it up and do your duties with a stiff upper lip. I know that type of people are sneered at nowadays, but it's as valid as other people's choices. But on my other side, I think I got a very talkative and emotional genetics, or else it's a reflection of how education and culture has changed in my generation. So in my generation if you're in pain, you talk about it and do something about it. And my mother didn't have a great relationship with her mother, and I think she didn't want that to be the case between us, so she and I are very close and talk a lot, and I personally am very open with her. We always laugh because we all know I can't keep a secret. If you tell me, you've told everyone else in the family. My sister is very reserved and doesn't talk about personal stuff AT ALL. She has more of the stiff upper lip in her.

I think I'm rambling. Anyway, I tried gabapentin and it didn't touch the pain I was having, but Lyrica is helping. So insurance can stuff it with their "have you tried anything cheaper? we recommend you try gabapentin." I hate how insurance thinks they know better than your doctor.

I have been reading a lot about Lyrica and it really seems to affect different people very differently. The side effects seem to have a lot of variety. I don't know if I've seen someone else mention jerking, but I've seen people comment on the "abdominal distension," (and that is making it rough with pants, because sometimes I have to deal with the pot belly, and other times the pot belly is gone, so I almost need two sets of pants), and the ADD which some people just can't stand, and vertigo, and drowsiness, and nausea, and all sorts of stuff.

It seems hard to distinguish what's from MS and what's from Lyrica now. I've been dizzy and clumsier lately; is that from MS (and I've been off the Betaseron for a month now, in advance of starting Tysabri), or is it a side effect of Lyrica?

This is a long post. I need some friends to talk to, but the friends I do have don't understand this stuff. Or else I don't want to get this personal face-to-face, or with my real name attached, or something. Some third thing, as SpongeBob says. So I unload here!

[derrie]

I feel you, Hawkgirl. I sort of love our Lyrica thread, because I think I sound like a crazy person when I try to talk about this sometimes weird and often wonderful drug to normal people. And your DH shouldn't think of you as an addict because you are careful about taking your doses! Missing a Lyrica dose can actually be somewhat dangerous, and doctors won't stop you on the drug without a very slow taper down to a low dose. Abruptly stopping Lyrica can cause intense withdrawal symptoms and even seizures. Maybe you can mention to your DH how important it is to stay on your schedule with Lyrica?

As far as the jerking goes, Lyrica has been reported in rare situations to cause myoclonus. So -- lucky me -- I am one of the rare. Seriously, I wish I could take a drug without having some side effect. I always have a side effect.

Regarding insurance, if you've tried and failed with gabapentin recently, your insurance shouldn't be trying to force you to try it again. Have they been in contact with your doctor's office. My insurance requires trying gabapentin before they'll authorize Lyrica, but once you've given gabapentin a go, and the doctor verifies that it doesn't work for you, that's when you should be able to get Lyrica.

I think it's likely that Lyrica is causing the clumsiness. I have not had significant balance or clumsiness issues before Lyrica, but now I sort of stumble down hallways at work, and I cannot take corners fast. I've only fallen once, though, and again-- the pain relief is worth it. Unfortunately, the pain relief is not complete, and I am scared of going any higher on my dose because of my already-proven sensitivity to the drug. I'm worried if I go higher to help the pain, the myoclonus will get worse, and the balance issues, too.

Ah well, we'll see how I handle the diminished leg pain.

Go Team Lyrica.

[Hawkgirl]

Go team Lyrica! It may not be for everyone, but it's helping me!

I should talk to DH about how I need to try to take it at the same times every day. So it's not like I'm sweating it out for my next fix; I just want to be sure I take my pills when I'm supposed to.

Eww, I just made what I thought was hot chocolate and it's Butterfinger chocolate. Delicious, but when you're not expecting it ....

In my state, the insurance had to register me before mailing me a "controlled substance." Yoicks. I actually had doubts about if it were one of those scams where someone tries to get your SSN or something. But finally I was convinced. It just felt fishy, that someone would call *me* but then ask me to verify who *I* am. I don't know what anybody knows. I don't know if the insurance has contact with my doctor or what. You'd think they could see from their records that I've been on gabapentin recently. Maybe that was just a form letter we got.

I'm sorry for your jerking! I have been falling down more, and dropping things more often. I broke my best casserole dish. But it's still worth it! When the pain creeps back, I remember how awful it was, and then I don't mind.

[Hawkgirl]

Got the shakes bad today. And the blurred vision. I am trying to "make do" until my mail-order meds arrive. I bought five days worth out of my pocket, and I don't think it will go through. I don't want to buy more, so I'm doing all sorts of crazy stuff to try to eek by. Don't try this stuff at home kids!

Here is my attempt at objective analysis. And it's hard to be objective when you are the object. Anyway: more than 150 mg/x3 per day does not give any extra benefit. Unless it's just now arriving. Less than 150 mg/x3 per day, and you get a headache. Not unbearable.

The hug is getting bad though. I don't know how to correlate it to the Lyrica. It is not as bad as it was when I started the Lyrica, but it's ratcheting up. Little worse all the time. I think it's because I'm under an extreme amount of stress. All my kids were born in December, so I have three birthdays to plan and buy for, and the two olders want to bring a treat for their class at school. We exed out the parties, so I don't have to do that. But that also goes with hurt feelings and disappointment in not enough presents, and "but my friend had a party and invited me-eee!" And then it all has to be juggled with Christmas, and should we give this gift for b-day or Christmas? Blah blah blah.

I'm worried about getting my Lyrica. I'm worried about the Lyrica might stop working for my pain. It seems like (but I don't remember clearly) most things I've been given will work for a while and then stop working. This pain is relentless. How can my body keep it up? Or is that part of the pain, is the exhausted muscles trying to tell me to stop? But my brain can't answer anymore.

SCREW!!! That is what DH and I do when you are just cursing the air in general. You have to bellow it out and shake your fist at the sky. It is not directed at God; only at the air around you, or the clouds, or a bird that pooped on your car.