There are some new fibro drugs on the horizon that look pretty promising. I try to keep informed of the newest research. It amazes me how most of the research on this disease is done in other countries, mostly Europe, instead of here. I am excited about them because of the lesser side effects and no weight gain. I hope that you have found this of interest.
A dual reuptake inhibitor that boosts seratonin and norepinephrine in the central nervous system. It concentrates more on the norepinephrine that inhibitís the bodyís pain process. Because every fibro patient has different reactions this will be more preferred than Cymbalta and with fewer side effects. It may cause a little more elevation in the pulse and blood pressure. Hopefully FDA approved in October 2008.
This is a sleep medication that reduces pain and other fibro symptoms because it will enhance a better quality of sleep in the deep sleep level. It is derived from another powerful medication called GHB (gamma-hydroxybutyrate). This will deter some doctors from prescribing it, but there are still so many that donít even prescribe opiates which is ridiculous. The better quality of sleep will help with the tiredness, pain and fibro fog. The FDA will approve it for fibro, if it shows in further testing to show significant improvement with pain, not just sleep. Could be FDA approved by 2010. This medication would only come from one central pharmacy in the U.S..
This drug may help with daytime tiredness and fibro fog. This is another drug that enhances the norepinephine. This is in the Cymbalta group, but does not cause weight gain. It is not available in the U. S., but may be by 2010 also. It has been used in 50 countries around the world for depression.
This drug inhibitís the hyperactivity in neurons that cause our elevated pain state while not harming the regular functions of the neuron. It is an anti-epileptic drug in a class that Lyrica is in, but will not work the same. There are fairly mild possible side effects which are dizziness, but goes away in a few days and tremors possibly with persons having diabetic neuropathic pain. Could be approved by 2011 for fibro use. It is expected to be approved for seizures by September 2008. It was approved last year in Europe for seizure control.
This drug is delivered to the body in a once a day patch. It works like dopamine in the body to inhibit pain. The side effects in high doses can be fluid retention in the arms and legs 9%, hallucinations 5%, but more common 35% redness or irritation at the patch site. This drug was approved by the FDA in 2007 for Parkinsonís disease. It was submitted this year for treating restless leg syndrome (I hate the word syndrome, it makes things sound insignificant and made up) in low doses. If all testing goes well may be used for fibro by 2012. It has been used in Europe for Parkinsonís since 2006.
Wow. I don't know about the other meds, but personally, I wouldn't ever consider Xyrem. Not because of your description--I already know about it, since someone recommended it to me a while back, but I refused.
I tend to have really extreme reactions to medication; I seriously thought I was dying when I had to take hydromet syrup for pertussis. I can't be sure I'd react badly, of course, but there's a good chance I would.
Secondly, I've heard nothing but horror stories from people who've tried it. You have to wake up in the middle of the night to take a second dose, and some people who take it just can't stomach it--they're up all night throwing up.
Even if it sounds like it might help, the risks for awful side effects, personally, are enough to deter me from ever trying it.
And do you by any chance know if Lacosamide is in the same class as the anti-epileptic drugs? I'm on Lamictal (anti-seizure drug) right now for migraines, and I'm wondering if it's similar.
Last edited by shelovescliche; 08-07-2008 at 11:38 PM.
I as well have wierd reactions to medication. Like any expectorant that has guifenesin in it...............I went on that horror-go-round a few years ago.
This Xyrem is in the phase 3 trials. I imagine they will be testing several doses, etc.. I don't do well on opiates, but if I can stand the pain no longer I take them with nausea medication and that works for me as long as I am lying down. If I'm up for more than 10 minutes I am very nauseated. When I'm lying down I feel fine, not drowsy, etc., it just takes the pain away.
Yes, Lacosamide is an anti-epileptic drug according to the article. Neurontin and Lyrica are also in this class. I have horrible side effects from this type of drug. My headaches were so severe and were caused by nerve entrapment. I went through nerve blocks and ablations which helped for a few years, having them redone when the nerve regenerated. I now have a stimulator in my lower back connected to 2 electrodes in my head. This took 80% of my headaches away. I don't take the lyrica, etc. for the dying nerve pain, by the time I have these procedures done, nothing hurts as bad as it did. I like these type of things, less medication to take. Because most of my pain is myofascial everywhere I do take soma at night along with elavil and ambien. If I get too bad I can take more soma, but I try to deal with it, because I've never been a pill taker. If I get really bad I take to my bed with morphine, nausea medicine, ice bags and sip hot cups of jello until it's over.
I really love this site because you can see different views, what works for some is a nightmare for others and you get to see the bigger picture.
Last edited by moderator2; 08-09-2008 at 05:52 AM.
Reason: everyone is responsible to know the posting rules, therefore, it is not necessary to discuss them
Yes the wonder drug Cymbalta (NOT) has been said to be a fibro drug for several months. I took it a few years back, it made me suicidal, jumpy and gained 40 pounds. I'm finding that on an average it's 50/50 on who it's working or not working for. I personally know no one that have had a good experience with it. Same for that other drug Lyrica, it just made me and everyone I know feel worse, except for 1 that said it helped with the shingles. I wish that these drugs weren't advertised on the TV as like miracle drugs, it makes our diseases sound like they'll be cured. (Doubtful that the ladies in the commercials have it, they don't look tired and their faces aren't drawn........haha.)
Yes I do get on the computer and look into things...there's a couple more sites on this order. I also get a newsletter quarterly, it has new drugs, new research, ways to talk to people that don't get it, helpful hints, studies........it's $25/yr.. Wish I could say the name of it. I am on this thing at night because I don't sleep well or I'm waiting for the evening meds to kick in. It's hard to be on this, it really bothers my shoulders and @ times gives me headaches that the stimulator doesn't help.
I've written 3 and 1/2 books unrelated to this and have started sending out manuscripts.........The Harry Potter writer sent out a gazillion manuscripts and got about that many I'm sorry's this isn't what we're looking for right now. It doesn't discourage me though, I had a couple of poems published when I was in high school. So that occupies time, tweaking things.
Went to the pain doctor today and it went quick, only had to wait 3 hours!!!!! He takes his time, there's other docs there.....but it's also a place to teach docs that want to specialize in pain management. I had a Ken doll today, wasn't really impressed and he was pushing so hard on my hips and tailbone area it made me cry. What part about my clothes even hurt it? The students do the visit thing and then go get the regular doc and they go through things. Ken asked me which area I wanted done first and I said I don't know they hurt bad the same. I think the Ken doll was trying too hard. So doc and I decided to do an ablation to the left of my tailbone 1st, had the right done a month ago. That'll be the 27th of this month I think. Then I'll get injections between lower lumbar and 1, 2 and 3 of the tailbone the 24th of september. I try to be funny and have a good sense of humor, but this is really hurting and vicadin is only taking the edge off. So I have ice on it a lot. My youngest daughter is marrying my pain doctor's cousin, isn't that a hoot? They have the same kind of wierd things that they do.
I know this is an old thread, but I was searching to see if anyone had talked about Reboxetine on the Fibro board and didn't find much. I'm in the U.S. and in the clinical study for it. The first two weeks at the 4mg (once a day) dosage was great, but then we went double-blind and I know my dosage must've been at least double. Blurgh. However, my partner and I are starting the extended open study later today, so we can start at 4mg and only move higher if we want.
We've tried just about everything possible for our Fibro - Lyrica, Cymbalta, opioids (which has worked the best and we've stuck with it), Robaxin, Soma, Flexeril (wiped me out for 48 hours, excellent if I was looking for a coma drug - so bizarre as I usually have a pretty high tolerance for most meds), etc. Reboxetine has been the best so far at providing pain relief (well, not as good as Oxycodone, Oxycontin & Fentanyl Patches, but we'll still have our Oxycodone to use when we need it), mental clarity (the drug is a reformulation of Strattera), and helping A LOT with the fatigue. Also, it works super fast, so we could tell within a few days that it was working.
The side effects that we didn't like - excessive sweating and difficulty getting to sleep at night. However, we both had to quit Lyrica because of the side effects before we even got to the higher dose meant for Fibro. It made my ankles swell, caused EXTREME fatigue (like falling asleep on the toilet!), probably caused weight gain, but I wasn't keeping track of it then. I barely leave the house right now because of the fatigue & pain, so I wasn't overly concerned with my weight when I was taking the Lyrica - my partner also has Fibro, so weight fluctuations are just part of the deal of trying new meds. The Reboxetine isn't supposed to cause weight gain and it's been approved as a depression med, and I know that's a nice bonus for some of the FMS people who are suffering from that as well.
I'm excited to be starting the open study, so I can get the dosage I want and that I think my body likes. I've been totally exhausted since the first study ended and occasionally have to take Dexedrine (my house is literally like a pharmacy - I also have had herniated disk surgery, and I still have back/leg problems, but not nearly as bad as the incapacitating pain of the jumbo herniation), but while it wakes me up, it often makes me feel nauseous later on in the day.
We both really wanted to try Xyrem, but couldn't get our pain mgt doctor to agree to it. He doesn't want to be "cutting edge", although he's pretty excited about the upcoming approval of Reboxetine. He believes that it'll happen within months and he's anxious to start trying it with his Fibro patients based on what we've told him. It'll be nice for him to have something else in his arsenal (while he isn't "cutting edge", he's been really good with us and letting us try just about anything that could help relieve our pain & fatigue) and I'd like to see him get the same results that the clinical study doctor has been getting - she's had patients rave about the drug. It's also nice that the results can be felt so quickly, so no one has to take the drug for months wondering when they're supposed to feel better. I believe I felt better the first day, but definitely by Day 3, I was in less pain and mostly feeling awake in the morning. Before the starting the drug, I felt like I was never really awake and clear-headed. I could sleep for days & days, just getting up to go to the bathroom and take care of the pets. We'd suck it up and suffer to go out for our doctor's appointments and our new library (it's so fabulous!), but otherwise, we'd stay home.
If anyone is interested, I'll come back and let you know how the open study is going. I'm looking forward to trying the lower dose again and for a longer period of time.
I just wanted to post to say that I am one that has been taking Lyrica and Cymbalta for a couple of years now. It has helped me immensely, I was up to 300mg of Lyrica about 6 months ago and had to reduce my dosage to 75 mg because of the swelling in the feet, but I am O.K. now on 75mg. Yes, I have gained some weight, but I have far less pain then I used to, I also take flexeril at night. Now, If I could just get rid of my headaches!
DemonFairy, yes!!!!! Please do put how you're doing with the studies. Your input will be wonderful. Let me say that you and your partner are very brave doing this. I'd be too scared to to be honest with new drugs. It's people like you that we cherish for doing these things. I have come from a family that has wierd reactions to medication. If I do start one it's done during a time that my husband is home just in case anything happens
Sunny, I'm glad you're one of the ones with a good experience on those two drugs. As for the headaches, I was a guinae pig for a stimulator put into the head. They have been around for a number of years, but not there. I had headaches pretty near 24-7. After years of getting an ablation once a year to the occipital nerve on the left side, it didn't work anymore. But it did for about 8 years. It got to be where it wasn't helping for as long. My pain doctor said this is a last resort but I'd like to try it, so I said go for it. I have 2 electrodes put under the scalp that like section off the lower 1/4 of my head. It was very painful for the first part of it you have to be perfectly still and it the leads went in and out and stimulated until it did help, then thank heavens they put me out. Very bad few days, but let me say that when I woke up in the recovery room and he turned that on my headache went away instantly. We all cried and hugged. I have it turned on always. It sort of short-curcuits the nerves. I still get a bad headache now and then, but this guy gave me back so much. So there's things out there that you can do. A few days of yikes is worth it for me to go with these kinds of procedures. It has it's drawbacks, no MRI's and you have to be patted down at airports. The security people are more interested in why I have that and if it works and who put it in, etc.. Good luck kiddo.