Lyrica - DONE WITH IT

Does anyone use it? I have an appointment with pain management tomorrow and I'm desperate. I don't like the looks of the side effects though.

I looked into it for neuropathy - I don't want it.

You once talked about looking into acupuncture - have you? [I know it will take time from work but maybe it might work for you]

Time and expense, my dear.

I was hoping Lyrica would help three things...myalgia, neuropathy and burning skin. Some people say it's a miracle drug and some say it was awful. I figure if it's awful, I can stop taking it. No one said anything about long-term side effects. I think I'm ready to try a low dose. I've been kicking it around for over a year and did actually have a script once. I never got it filled.

Exactly what I said, expense - however my wonderful, fantastic husband said do it, if it works it's worth the money & if it doesn't work then you tried. Bless him! I am having a slight bit of improvement - I hate saying that because as soon as I do most people then assume "she doesn't have neuropathy any more", bs I'll always have it I'll always have the symptoms and pain - but at the moment I do not feel like gnawing off my legs just below the knees. So it has been worth every penny spent!!

Sounds like you have made up your mind.

My husband told me to do acupuncture too - he doesn't care about money. I pay the bills though and would rather spend the money elsewhere (credit cards, clothes, vacation). If Lyrica doesn't work though, I will probably resort to acupuncture. It's just that after I get off of work, the last thing I want to do is go somewhere else. I just want to go home.

My husband cares about money. I don't know what it costs there - certainly more than a drug copay - but what I've spent certainly isn't going to pay for a vacation! It isn't something that is done daily. You know me and drugs, I hate them - I don't want to add another to the list and I will not increase neurontin.

I hate drugs too, but am really too tired/stressed/in pain to do anything after work. I've been too tired to do anything on weekends too. It's been a really rough winter.

Well, I got Lyrica. Vicodin is doing nothing. She was suggesting Tylenol w/codeine, thought Morphine would be too incapacitating for work, and I suggested Lyrica. I've been reading patient reviews and the good ones said that it helped "burning skin, muscle pain, neuropathy, depression, fatigue, and pain from cervical disk problems", all of which I have. This would really kill a lot of birds with one stone should I be so lucky. If this doesn't work, she suggested Neurontin.

She wanted to start me at a dose of 150 mg's twice a day, but I asked for 50 mg's instead. I can always work up, but I'd rather start at the lowest possible dose. I need a Pre-Auth from insurance, so I got 3 weeks of samples. Some people said it was the best thing they ever did - they got their life back. Others said it was horrible and should be taken off the market. I'm afraid to hope. It also seems that it helped a lot of people at first but lost its effectiveness over time. It might be a year before I really know.

The rheumatologist I just saw suggested Lyrica or Neurontin. I had Neurontin 1800mg and it didn't do much, so I'm really leery of Lyrica, but was considering it too. I decided to wait it out and look into it, so I'll just wait to see how your do on it, since our symptoms are so similar. Although, I wonder if some of my symptoms in my legs are from the clots and the increased histamine I have. Since starting on the histamine, I have had some decrease in symptoms, although not enough. Any decrease is heaven, until you realize you're still in a great deal of pain. Lol..

Good luck, keep us posted on how it works. Maybe I'll consider it.

Sandi,
Im sorry I hope this works for you. At my old job they offered accupunture for patients and for a discount to the employees and their families. I wanted to try it, to see if it would help for my joint pain but the lady wouldnt touch me. She said she was afraid to do it with my platelet issue. Go figure. Im keeping my fingers crossed that you can find some kind of relief.

Sandi I hope the med works for you.

Neurontin doesn't do much for me - but then I won't go to the high dose that most require for neuropathy.

It is funny how so many drugs are used for so many purposes. Isaac was on neurontin for his tics. Didn't help, but it did make him psychotic. (Seriously psychotic...he had thoughts of killing Dan and I by slitting our throats...pleasant!) His doctor suggested lyrica as another alternative. I haven't researched it yet. He's on clonidine at the moment.

I hope it helps for you Sandi!

Day 1:

I took 50 mg's before bed last night. I didn't sleep any better or any worse...about the same. Woke up this morning and as soon as I sat up in bed, I noticed the difference. I felt like the Tin Man did when he was oiled. No muscle stiffness! Keep in mind, this is a drug that is supposed to take a week or so to work. I got to work and for the first time in a very long time, I felt alert, happy, no brain fog and pretty much pain free. I didn't feel like I have the flu and I can't remember the last time I felt like that. I also haven't been able to move freely in years. I was able to multi-task, didn't get crabby, handled sticky situations with ease.

The drug is supposed to only last for 6 hours, so I was surprised that it lasted all day. I was able to move my neck easily, had no tension headache (forgot what that felt like), and the burning skin was minimal. I did still have some neuropathy in legs.

The downside - I noticed shortness of breath. I get that way sometimes though when my siuses are acting up or acid reflux is acting up, so I wasn't too concerned. I did look it up though and it has been reported as a side effect, in fact, some people ended up with pulmonary edema. That is a concern that I will keep my eye on.

I keep reading reviews and there are more bad ones than good ones. Horrible side effects are being reported, even at low doses. I am not going to say this is my miracle drug quite yet. The whole thing reminds me of the movie Awakenings - things start out great then go down hill and end badly. I am very leery and cautious and even a bit afraid. However, I won't know if I am one of the lucky ones until I give it a shot. If it gets bad, I'll quit.

I usually have a rule that I never take a new drug on a work night, only on weekends. I broke my own rule, but it turned out okay. I am supposed to start 50 mg's in the mornings as well in a week, but I don't think I will do that unless and until this dose stops working. My belief is to always use the lowest possible dose, so I will.

Right now, I am amazed. I hope I can still say that a few months from now.

Day 2:

Woke up feeling hung over, but I also slept too long. Not quite as much pain relief as yesterday, but still better than usual. No shortness of breath today.

yea! I'm going to believe with you that this will help you live a happier life and no nasty side effects.
It's gonna be a good day!

Sandi,
Keep reporting how you feel, I am very interested. I'm glad you had some immediate relief, although I'm concerned about that shortness of breath. Glad it's better the second day.

Can you post any links you have on Lyrica,so I can read up on it. Rheumatologist did suggest it for me too. I was just not prepared to make a decision on another drug, considering I just started all the antihistamine drugs. He also seemed to shy away from the suggestion, almost immediately after making the suggestion. I wonder if it was because of the shortness of breath and the fact that I've had an increase in SOB, along with wheezing and chest pain. I see him in 3 months, so in the mean time, keep posting your response to the drug and any side effects you're having.

Thanks,
Kim

Kim:

I will post. As much for anyone else as for myself....I want to keep track of side effects. Today was the same as yesterday.

Mostly, I've been reading patient reviews. I figure they are more honest than any medical site, although I understand the lack of credibility. They are honest, and very scary.

I never considered myself to have fibromyalgia - didn't believe in the diagnosis. But the more I read and am finding a response to this drug, I'm starting to believe in it. I always said I have "myalgia" because that is what it is always referred to on the Lupus sites. Maybe there is more to it. A lot of the fibro patients also have the burning skin, feeling flu-like and bug crawling sensations, and they are now saying that fibro is related to nerves, so maybe that is what I have. Whatever it is, it sucks.

I was given it in the hospital after my partial knee replacement. I'm expecting to get it again with my upcoming total knee replacement. I didn't notice any side effects to it, but then again, I took it only for 3 days. I'm not sure why it is given following these surgeries, but it is.

Hmmm. I wouldn't know Caroline. Yeah, most of the side effects are weeks or months into the drug.

I did e-mail my Rheumatologist today and told her I started it. I asked about her other patients and she said the majority do well. Several have had side effects that went away when the dose was lowered. A few had to discontinue.

Day 5:

No side effects yet. Considering calling this my wonder drug. I'm supposed to start 50 mg's twice a day on Friday, but not sure if I want to do that since 50 mg's once a day is doing okay. It starts to wear off in the evenings, but it works while I'm at work and that's all I care about right now.

I still have typical joint aches and pains, but muscles are pretty darn good. It's also seemed to help tension headaches.

Holy cow -- I am so excited for you and for me, because if you are still doing great in a week or 2, I'm calling the rheumatologist. I would love to get relief from the muscle pain. How about fatigue? Did you experience fatigue with your muscle pain? If so, any relief from that? Or, is the drug causing any fatigue? I read that it can cause fatigue.

It would be so nice not to have neuropathy and burning skin. Is that improved for you too?

Kim:

I have to think about this before I answer. Hmmm. I'd say the muscle stiffness and pain, along with tension headaches, were the main cause of my fogginess and fatigue. It was also the cause of my constant crankiness. I was always miserable and never alert or fully functioning. I was barely functioning. Since Lyrica, I wake up easier, can handle the stress at work, feel much more alert and energetic, can find the right words, and have actually been happy. Happy? What's that?

Lyrica can cause sleepiness, but I've been taking it before bed so I don't notice. That was the reason I was supposed to wait a week before starting it in the morning...so that side effect would supposedly wear off.

Funny, I haven't had the burning skin for a few days, but it's been warmer here and it always fades when the weather is warmer, so I don't know if Lyrica did that or not. As for the neuropathy, I just realized that I didn't have many bugs today - maybe a little here and there and just now when I'm talking about it (how weird is that?)

I'm very surprised to notice all this at such a low dose, and so soon. She wanted to start me at 150 mg's twice a day. I'm glad I spoke up and asked for a lower dose. You can always go up, and it's better than getting hit with side effects; that makes you want to stop the drug altogether. That's what happened to me with Cymbalta. Anyway, my fear is that the drug will become less effective in time, I'll have to up the dose, and then I'll end up with side effects that are not tolerable. I'd be very sad and disappointed if that happened. I've read that stoppng the drug is very hard on the body too when you've been taking it for a while.

A few times at work today when I stood up or was walking down the hall, it hit me how hard it used to be. Again, I can only compare it to the Tin Man being oiled. I feel oiled and it's hard to describe. None of the anti-inflammatories ever did that and I take a lot of those. I'm still taking Vicodin because I am, of course, addicted now. I will taper that eventually but I'm finding I still need the evening one right now. I take 1/2 in the morning when I get to work and maybe I can stop that one soon. I'm also thinking of cutting back on Naproxen (1,000 mg's a day) and Prednisone (10 mg's a day). I still need Flexeril and Plaquenil and will not stop those.

This could end badly and I am always the skeptic, so I'm not jumping up and down yet. But I am enjoying this break and forgot what it felt like to not have constant, debilitating muscle pain. It was all I thought about all day, every day. It's nice to think about something else.

Sandi, I am beyond happy for you. I pray you enjoy every second of relief that you get. I understand the skepticism, I'm the same way. I have a tendancy to over analize everything. Sometimes that's good and sometimes not! I'm believing for nothing but good ahead for you. Stay strong!

I am so glad this is working for you. Your description of the Tin man needing oil, is about how I'd describe it too. I can't sit for longer then 15 or 20 minutes, without feeling like I've been sitting for hours and hours. Very stiff, sometimes not able to even get out of the chair and generally I need to use both arms to rise, or I'm actually stumble down and have even fallen. I can't walk and carry much, and going down stairs while carrying something is almost impossible.

I found no relief from these symptoms with neurontin, although I did sleep better, but I had weird dreams. I think this is the reason why I said no to Lyrica, also when the rheumatologist suggested Lyrica, he also suggested neurontin and snce I had no luck with neurontin, I figured I'd probably not get much if any relief from Lyrica. I think I made an assumption they were pretty similar and I hated how neurontin made me feel, so whatever benefit I might have received, I didn't think it was worth going back on it. I also had a problem going off neurontin. I had ticks at the higher dose, which gave me some benefit, nightmares and just felt weird.

Since I was on neurontin prior to transplant, it could be it was providing me benefit, which I never realized, because my lupus was so bad. I should probably reconsider Lyrica, since my lupus is different now. I'd love to get rid of some of this stiffness and if it helped my fatigue, I'd be so happy. I can't seem to do much lately, without needing to rest after tasks I used to do easier. That has me so worried. I work in the kitchen for 20 minutes and I need to rest, I notice I lean on things more lately. It's really making me crazy. I don't feel comfortable going out early in the morning, or late in the afternoon, so I'm squeezing things in a few hours a day. I've got Jim driving me all over the place whenever I can. Good thing he's such a nice guy. I also notice lately Walmart lights making me feel fatigued before I leave the store. Although, it could be the trip to the large grocery store. I used to avoid these stores, but had slowly begun going back to the larger stores and now I notice symptoms I thought were behind me. It could be the antihistamines, but the rheumatologist and immunologist said the ones I'm on shouldn't cause as much fatigue as I describe. I'd rather it was the drugs, because the alternative is continued emerging lupus symptoms.

The rheumatologist really pushed the idea of fibromyalgia, with pretty much every trigger spot he poked causing me severe pain. He had me in tears from the pain, so then I felt like such a baby. I don't complain much, or whine or cry when I go to a doctor, but this was beyond what I could deal with. I was exhausted the rest of the day after his poking at all those trigger spots. Like you, I was a skeptic about fibromyalgia adn I guess still am, but dang it, those pokes hurt like hell. I don't know if it's lupus or fibro causing all my problems, so I think it's important for me to find something that will help fibro symptoms, so I can see exactly what I'm dealing with.

My ANA was still negative, but Sm and RNP had increased slightly, which has been the pattern for the last several lupus labs. The rheumatologist did say my lupus is stil active and when I questioned him about the negative ANA, he said he has seen negative ANA and when they are run, it's just a quick titer, not as detailed as the lupus tests. That made sense to me. So, do I have active lupus flare, or flaring fibro? What makes me really concerned is the drop in my platelets. I know they are still normal, but to drop from 250 to 150, kind of freaks me out. I had a CBC done last week, but it was for NW and I couldn't get the results from the lab. Yesterday I stopped by to drop off the 24 hour urinalysis and asked for the lab results. They gave me some crazy reason why they didn't have it. Made me nuts, but I can't really argue with them, because they all work with Jim and I really should believe them. They told me I had to call NW. I was too freaked out to call NW today and I don't know if I want to know what they are. I go to NW next week for my 3 year post transplant follow up and frankly, I don't want to have a lousy weekend if the counts are down. But, not knowing might get hard to deal with, so what to do? Arrrggggg... I hate this.

When I get through this NW appointments and all the tests they do, maybe I'll feel better. Maybe the stress of the drop in counts, the worry and upcoming appointment is stressing me out. The last several months with this chronic hives and not knowing what that's about and why? Another auto antibody against mast cells,just made me keep wondering if lupus was returning, then bang those dam platelets. I feel like I'm walking a fine line between remission and full blown lupus again. Then there's always that fibro diagnosis, which could be causing all my symptoms of pain and fatigue.

Well, you could try a low dose. I was expecting nightmares too, but so far I haven't had any. I am used to getting them anyway with the Vicodin. I did stop taking Vicodin close to bedtime and the nightmares have become less frequent. I'd bet that side effect depends on the Lyrica dose.

I also cannot go to the stores with the flourescent lights. If I go to Walmart or Home Depot, I go during my lunch hour so I an get in and out quickly. I don't do grocery shoppng any more. It's a shame that the world adapts everything for people with disabilities, but forget about us. The lights in those stores are pretty potent! 15 minutes and I feel it.

My doctors don't even run the ANA any more and haven't for some time. They just look at the dsDNA.

Yea, most of my rheumatologist don't bother running it,but when I was in the hospital in Sept, the staff doctor ran all of the lupus tests. I'll have the run again at NW, but that's for research.

I do think I'll try a low dose of Lyrica and will contact the rheumatologist after I go to NW. Probably some time in the next couple of weeks. I needed to get this rash thing behind me and hopefully get these steroids lowered soon too. I do notice a dramatic increase in symptoms when I drop the dose, but I realize that's to be expected.

I get nightmares with a lot of different medications. Makes me crazy to wake up and know I had a nightmare, but can't remember them.

I remember my nightmares. When I have mine, I feel like I'm awake, but I know I'm asleep. I try to wake myself up but it's like being drugged (which I am) and not able to climb out of the dream. I will fall right back into the dream several times if I don't force myself to sit up and stay awake for a while. My dreams always take place in my bedroom and I know I'm in bed. There are things coming out of the closet or coming in the door, whatever I am facing when I'm laying down. Very weird.

Lyrica not working so great today.

I'm sorry Sandi. I wish there was something I could do to help!

I meant to update:

Thursday - Day 7: I took 100 mg's at bedtime and it worked great again on Friday.

Friday - Day 8: Only took 50 mg's at bedtime because I went out with a friend and had two glasses of wine. Not supposed to drink with Lyrica. Did not work good today.

100 mg's seems to be doing the trick, but I'm a zombie and slept in this morning. Late for work.