Provigil warning was issued

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Mar 26, 2006.

  1. TXFMmom

    TXFMmom New Member

    Provigil is being used to treat ADD and the FDA issued a warning for it, stating that some cases of Stevens Johnson syndrome had been associated with it in children.

    Stevens Johnson can occur with virtually any medication, but this really concerned me for individuals with FM and CFS, as our immune systems are already jeopardized.

    Read up on this, but it is an allegic reaction with extrme urtecaria, blisters, sloughing, and worse when can effect the entire body, skin, and even eyes.

    I had a severe reaction several years ago to an antibiotic, Rifampin, and I am certain that it was this disorder. I was an RN, Advanced Nurse Practitioner, and Certified Registered Nurse Anesthetist when it happened, and every doctor on the staff was STUMPED. THEY HAD NEVER SEEN ANYTHING LIKE IT.

    After seeing pictures of the people with it, I KNOW THAT WAS WHAT I HAD.

    Just a thought, as many of us take this med.

    I had a smaller outbreak about six months ago, and we couldn't pin down what it was from, but I had large blisters this time and they sloughed and caused scars.
  2. Mikie

    Mikie Moderator

    I have my own concerns about this drug because it works in the area of the brain which produces dopamine. Lately, I've seen several docs on TV express concern over long-term use of all drugs which affect the chemicals in the brain. No one knows what the long-term effects will be.

    I believe Cheney is correct in that Klonopin protects the neurons in the brain from premature death from the slight state of seizure which many of us experience. Still, I am hoping to be able to wean off of it as my health continues to improve.

    Unfortunately, too many docs are too willing to prescribe new meds with no info except that which is provied by the pharmaceutical reps. We really do have to do our own due diligence before we take meds.

    Love, Mikie
  3. Cromwell

    Cromwell New Member

    On that syndrome where a woman got it from taking one antibiotic pill. She sloughed everywhere, looked as if she had no skin plus lost eye covering etc. She actually miraculously survived as looks really normal and grew new skin. She jokes she is the only 40 year old with skin like a babys. Amazing she recovered.

    I think my friends son takes this so I will email her now.
    Love Anne C
  4. Luvapet

    Luvapet New Member

    Can you please tell me where I can find the warning? I take Provigil so this is very important for me to check out.
  5. TXFMmom

    TXFMmom New Member

    I saw it on line on AOL.

    However, it was issued by the FDA, so it will be on their site.

    I take Provigil and have not had any problem with it. In most cases, this syndrome is a consequence of antibiotics, but not always.

    One can take a medication for a long time, and then suddenly become allergic to it, however.
  6. Mikie

    Mikie Moderator

    Expressed by the docs on TV isn't about syndromes or allergies from taking these meds but rather that decades of use of them may cause the brain to be unable to produce the chemicals on its own. Parkinson's patients who take dopamine are only helped for a relatively short period of time. The concern with Provigil is that it may cause the brain to stop production of dopamine and induce Parkinsonionism. Dr. Cheney has expressed this concern too.

    I treid Provigil because my doc had samples and wanted to see what effect it would have on me. I decided that a trial of it wouldn't hurt. It had a paradoxical effect and made me groggy and tired. That may be because I believe I have ADD and in those with ADD, stimulants often have the opposite effect of that which is desired.

    I'll go get Dr. Cheney's article on stimulants and SSRI's. It was written before Provigil and SNRI's but I think it's valid for them too. This is just one doc's opinion/concern but he has devoted his life to healing CFIDS and is one of the leading experts in the field.

    Love, Mikie
  7. Mikie

    Mikie Moderator

    BTW, he dictates his articles so they tend to be a bit more dramatic in tone than if he were writing them.


    Paul Cheney, M.D., on SSRIs and Stimulants for Chronic Fatigue Syndrome: Frying the Brain?


    By Carol Sieverling
    Editor’s Note: This information is based on tapes of Carol Sieverling’s October 2000 patient visit with Dr. Cheney. He gave permission to share this information, but has not reviewed or edited it.

    Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr. Cheney shows patients the book Prozac Backlash: Overcoming the Dangers of Prozac, Zoloft, Paxil and Other Antidepressants by Joseph Glenmullen, M.D., a psychiatrist at Harvard Medical School. It includes endorsements from other Ivy League psychiatrists. Cheney calls the implications of this book "staggering."

    When talking with patients, Cheney usually opens the book to a picture of a monkey's brain before and after it received a very potent SSRI. The "before" photo shows a dark background filled with fine white lines and white blobs, healthy neurons. The "after" photo is very dark, only a few white lines and blobs remain. Most of the brain cells had been "fried."

    SSRIs and stimulants work by increasing the firing of neurons. While this often has great benefits in the short term, doctors are now realizing that long term use "fries" brain cells. The body views any neuron that fires excessively over time as damaged, and destroys it.

    SSRIs and stimulants, taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders. Many doctors have recently seen a sudden increase in patients with neurological symptoms, and most have been on Prozac, or a similar drug, for about 10 years. Cheney is seeing this in his own practice.

    During office visits, Cheney also shows patients a copy of the May 22, 2000 issue of Newsweek with Michael J. Fox on the cover. It has an excellent article on Parkinson's Disease, a condition that involves a loss of neurons in the area associated with motor control. Parkinson's drugs stimulate the remaining neurons to "perform heroically," firing excessively. However, the article notes that while benefits are seen initially, neurological symptoms get much worse at the three to five-year point. Patients experience wild involuntary movements, etc. These drugs, though helpful in the short term, actually speed up the degenerative process.

    What mechanisms are at work causing neurons to be "fried?" SSRIs are often prescribed for depression, which involves a lack of serotonin. Serotonin is a neurotransmitter, a chemical messenger. One neuron releases a burst of it into the intersynaptic cleft, (the gap between neurons). The serotonin is then taken up by special receptors in the adjacent neuron. Thus a message is sent from one neuron to another, with serotonin carrying the message across the gap. Excess serotonin is cleared away before a new message is sent. A "reuptake channel" in one neuron vacuums up the left over serotonin.

    SSRIs are designed to address a lack of serotonin by blocking the reuptake channel from vacuuming up excess serotonin. While this allows more serotonin to connect with the receptors, often too much is left floating in the intersynaptic cleft. The only way the body can get rid of this excess serotonin is to oxidize it. Unfortunately, this turns it into a toxic compound that, over time, kills both the sending and receiving neurons.

    Cheney stated, "What starts out as an attempt to increase serotonin and reduce symptoms ends up with the destruction of the serotonergic system itself. It takes about a decade, more in some, less in others.

    Now when the serotonergic nerves are dead, you start getting these motor neuron problems, which is what we're seeing." Cheney commented, "You know what a lot of doctors (who do not understand CFIDS) are doing? They're saying 'Well, let's just give them an antidepressant'. And they are frying their (patients') brains and they don't even know it. In fact, a CFIDS patient on one of these drugs fries their brain even faster than a non-CFIDS person." (See the article on Klonopin for an explanation.)

    Cheney went on to say, "The other way some people with CFIDS are going is stimulating the brain, using drugs like Ritalin or Provigil. They do the same thing - they fry the brain. They cause neurons to fire at lower stimulus by lowering the firing threshold. All stimulants are dangerous, especially over the long haul. I'm not saying that you might not find them useful in the short-term. But over the long term, the physiology demands that neurons that fire excessively be killed."

    Cheney strongly urges anyone taking antidepressants or stimulants to read Glenmullen's book, which lists safe alternatives to SSRIs.

    © 2002 Carol Sieverling. Reprinted with permission.

    Related Cheney Article:
    Dr. Paul Cheney Discusses the Benefits of Klonopin

  8. gramaT

    gramaT New Member

    Thanks for posting Dr Cheney's article. We all need to read this and keep in mind the effects of some of these drugs esp. antidepressants and stimulants. I wanted my 16 yr old grandaughter to take add meds but after reading that I don't think so.

    thanks again
    Carolyn From Illinois
  9. Chermione

    Chermione New Member

    Thanks for posting this! That is so scary! I have taken Provigil but not on a long term basis. But, I have been on Zoloft for quite a while and have tried many different antidepressants prior. I have noticed lately that I twitch hard a lot, especially at night when I'm trying to sleep. I've been wondering what the heck that's from. Now I think I might know. I am just scared right now and think I'm going to wean from Zoloft and read up on alternatives.

  10. Mikie

    Mikie Moderator

    It is the patient who really has to make the decision. I think an informed decision is difficult because the pharmaceutical companies may run many studies and then cherry pick the ones which show the meds in the safest light. Docs get most of their info from the sales reps and their literature. It has bothered me for years that docs hand out prescriptions for AD's like they are candy. These are heavy hitter meds and great care should be taken before prescribing them and followup is crucial during the first few months.

    I believe AD's have been a God send to many, especially those with clinical depression. Some with our illnesses seem to benefit from them, especially the new ones; however, I have read a lot of posts here describing very negative experiences with these meds. For me, they just aren't an option.

    I did a lot of reading before taking Klonopin. It has addressed so many of my symptoms and allowed me to get good restful sleep. I don't think I could have started to recover without the quality sleep. I hope Cheney is right in that it has protected my neurons. I'm not judging anyone who finds relief in stimulants or AD's. We each have to weigh the potential risks versus the potential benefits in making our decision.

    Julehan is right; stopping meds suddenly without a doc's supervision can be very dangerous. I am weaning off my Klonopin and I'm doing it 1/4 tablet a month. To go too fast can cause seizure state symptoms or even rebound seizures. If I cannot wean off now, I'll figure I still need the med and will try again later when I've made more progress with my health.

    This is a good thread and topic.

    Love, Mikie
  11. Jgavi

    Jgavi New Member

    YEAH, I am glad you posted this- many new people don't know that medications in the past could be the reason why we have FMS/CFS today.

    Many friends of mine have FMS/CFS because of all the heavy drug use in high school-

    It has already been warned by the FDA that the kids today who are taken even stronger drugs like ecstasy, meth, etc. Will have even more health problems earlier than the current baby boomers.

    I am not saying all of us abused drugs in high school but it is interesting that people who took drugs or even prescription drugs during high school years are sick with FMS/CFS.

    My friend who is 45 years old took diet pills for many years in high school and college and has FMS/CFS.

    I believe my brain was damaged by the years of Prozac starting in 1987, I started to get sick in 1996.
    Stopped all anti-depressants in 2002.

    But I have to take narcotic medications for the pain- that's one thing I have to take-

    It is hard to absorb that money is more important to Drs and everyone connected to these medications. How these people can sleep and live on knowing that they are killing people slowly- money is the root of all evil...isnt it???


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