Narcolepsy Drug for Fibromyalgia Treatment?
Is a drug already on the market for narcolepsy what many of us with fibromyalgia (FMS) have been waiting for?
Jazz Pharmaceuticals, Inc., is set to begin Phase III clinical trials of sodium oxybate (the drug in Xyrem) as a fibromyalgia treatment. In narcolepsy (a condition that makes people fall asleep suddenly and at inappropriate times), sodium oxybate helps prevent excessive sleepiness and sudden loss of muscle control.
Some doctors already prescribe sodium oxybate for FMS, and clinical studies show that it can make us sleep a lot better and reduce pain. The drug actually calms the central nervous system and is believed to improve stage 3 and stage 4 sleep, which is often disrupted in people with FMS.
Of course, sodium oxybate comes with it’s share of things to consider:
- It’s classified as a Schedule III federally controlled substance because of its potential for abuse.
- You can’t get it through retail pharmacies. Instead, your doctor has to enroll you in a special program.
- Potentially serious side effects include:
- Confusion
- Difficulty breathing
- Heart palpitations
- Seizures
- Memory loss
- Sleepwalking
- Urinary incontinence
Sodium oxybate is one of several potential fibromyalgia treatments currently in the pipeline. Cymbalta (duloxetine) and milnacipran are awaiting FDA decision, and Effirma (oral flupirtine) now is being investigated for the first time in the U.S.
Have you ever taken Xyrem? How did it work for you? Are you glad to see more drugs seeking approval, or do you see it as the pharmaceutical companies just trying to make more money? Tell us, here or in About.com’s Fibromyalgia & Chronic Fatigue Syndrome forum.
Adrienne Dellwo
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I’m happy to see more drugs being investigated for those who can take them. For those of us who are very sensitive to medications and experience bad side effects and paradoxical effects, I would really like to see more emphasis on non-drug therapies. I am no longer willing to be a guinea pig–every time I give in to the pain and try another medication, recovering from my reaction to it takes two or three months out of my life. I would like to see much better insurance coverage for non-drug therapies including neurofeedback, physical therapy, nutritional supplements and drug therapies such as trigger point injections.
Hello Dear Friends! My question is likely not a common question here, but I could be wrong? I was diagnosed with (PSC) Primary Sclerosing Cholangitis which is a disease effecting my (the) liver and it is ultimately fatal, if not treated at the right time with a liver transplant. Also, there is the chance, hopefully a very small one for me, that the transplant wont take in a new host (me of course), but again I have and still do believe I’ll beat this dirty, yuck disease!
Mainly what I’m writing into you all for, on this Narcolepsy site, is due to the fact, liver disease in it’s end stages can prolifically cause severe (abhorrent) bouts of sleep, lasting sometimes for almost 2 days in my bed of course; however, I will fall asleep sitting upright in a chair, while watching tv, talking on the phone, even on the toilet a few times, which is abhorrently awful on our (the) spine(s) and anything else you can imagine, but luckily never while driving (knock on wood)… I do know, again, that end stage liver disease or failure perhaps, can cause wiked bouts of sleeping, but I’m wondering if I can get someone infinitely qualified, more than myself to give me his or her perspective, along with any advice??? Thanks much, take care, thanks for this site and those similar as they help us infinitely…
Much Sincerity & Peace All,
Rich
My husband has narcolepsy and Xyrem was the only medication that actually gave him a normal life. It was wonderful to see him so happy and lively. However we can not afford it so he no longer takes it. What a shame. He is a Viet Nam veteran but the VA hospital in Battle Creek Michigan will not perscribe it for him so that he can get it at less expence. They say it is too dangerous. So wasn’t Viet Nam more so? After reading this I am going to ask the neurologist about duloxetine and milncipran to help with cataplexy as this is the major symptom keeping him from leading an active life. Thanks for the information,
Karen
This is a very old post. But just in case someone comes across it:
I’m 26 years old, and have been diagnosed with Narcolepy AND Fibromyalgia AND Bipolar 2. However, I’ve been taking Xyrem for probably 3-4 years now and it is a dream come true. It’s not a cure. For me it fixes the issues by about 70%. But I can function now. I’m working around 40 hours a week. Sleep, mood, and pain are a vicious triangle. So keeping sleep more consistent is very helpful.
Xyrem is expensive. On high risk medical insurance it’s a $15 copay. Without insurance, it must be $1400 a month.
I haven’t seen my sleep doctor in years. Currently there is no cure for Narcolepsy, so he just refills the prescription with the special pharmacy over the phone.
Once again- it’s not a cure. But it has changed my life in a drastic way for the better.
I tried the Dr Max Powers HGH Spray -
I have fibromyalgia and went to a lecture at the Oregon Health Sciences University to learn the latest research. They had studied people with FMS when they were exercising & discovered that unlike normal people, FMS sufferers do not show increases in Human Growth Hormone levels when they exercise. This is why exercise is so difficult & exhausting for us.
They discovered that large doses of HGH virtually cured this condition. But the necessary dosage would cost about $800/mo. After the lecture I foundthe Dr Max Powers HGH Sprat at my local natural foods store and, although the dosage is far less than any prescription, I thought I would give it a try.
It took about 4 weeks to start noticing a difference, but then there was substantial improvement. My pain levels are not affected by this dosage, but my energy levels are up dramatically. I am now able to do yoga daily, which does decrease my pain level, and to do cardio workouts 2-3 times a week. Exercise is one of the best treatments for FMS. I have been using this product for 2 years now, including a 4-month break from it to make sure it was still making a difference.
A friend of mine researched the Dr Max HGH Spray formula in this product after discovering that HGH is not legally available w/o prescription - and this does seem to be working for me.
Cardio workout is always great if you want to cut down those fats.”`