Provigil warns about gluten-WOW!

Discussion in 'Fibromyalgia Main Forum' started by aintasgoodasIoncewas, Jul 28, 2009.

  1. So, I was reading up on Provigil, -again.

    This is a med, I sometimes take daily, but, most of the year, very sporadically, (holidays, dr appts, days where it is absolutely necessary that I be dressed, make-up, etc. )

    I have had an ongoing... dispute, with the very clinic that prescribed it to me! I won't go into details, but, suffice it to say, I've left more than once wondering if I am truly off my rocker, or, should I just be very, VERY concerned about ALL of my medical team(s)... now, I've not heard the rx'ing NP call it the wrong (category of) drug.. but, one or two nurses, have told me several times, that it is this ____ when I have read time and time again, and politely done my best, to inform them that no, it is not, it is ____ but has *similar* qualities to what they are stating, but, far less side effects, and potential for abuse than ___ drugs... which was, (just as ONE example) why it has actually been recommended by some doctors, for safe use in people with bipolar disorder... it does not seem to have the same potential to throw them into manias, as the _____ class of drugs do, and, even actually can have just a slight mood lift, in BPD )

    (who *wouldn't* have a shift in their mood (to feeling less depressed) if they weren't so TIRED they couldn't MOVE... My sister struggles terribly with her BPD/Borderline personality disorder, and, her own therapist agrees she should be tried on Provigil, to help her fatigue, and BPD (and any other major depressive disorder's fatigue) is just as crippling as that from CFS/FMS... and sis was dx'd with fibro earlier this yr, or late last yr too, now, on top of everything....

    Since her therapist mentioned it, she brought it up to her primary doctor, who also, like the nurse(s) who are also incorrect.... SHOUTED it's a class ____ drug!! and acted as if she had just asked him to prescribe her cocaine, or methamphetamine. I felt so awful for her, and bummed right along with her, because I just feel strongly, that it could help her, immensely.


    All of that said- I was reading on it again... and, much to my surprise, I'd not seen this before, but, plain as day, at the bottom of the drug information, on the website I was on...

    It said that it is not recommended that anyone with CELIAC'S Disease, or gluten intolerance use this medication, due to the possibility of the drug coming into contact with it, during the making/bottling process (obviously the last part, not an 'exact' quote)

    I know more & more foods, drinks, etc are putting more 'may contain, or have been in contact with' type warnings (in like size -10 font! Grr.)

    I also know that medications SHOULD all have this warning, as with peanuts also, just like shellfish allergy warnings, etc... but, this was a first- for me.

    I always read up on my medications, and do so not just from the 'insert' the pharmacist attaches to the bag, but, several websites too... and anytime I'm having any shift in symptoms, etc.. I will read again, and so, when Provigil, once again, was called the wrong class of drug, I read again, wondering if I was just mixing up words, or confusing them...

    and saw a celiac/gluten warning...

    I was dx'd with Celiac's disease in 2003, but, IUMC took biopsies from both, stomach, and the duodenum again, just Friday, while they were doing my EUS guided Celiac Plexus Nerve Block (a pancreas nerve block, done with a 22 gauge needle, through the stomach wall, using Endoscopic Ultrasound to view the area(s)

    I will see what this new report says, within the next 10 days or so... I know 2003, not a d**ed doctor mentioned Celiac's disease... just erosive gastritis, duodenitis, & some 'mild changes in the ileum, indicative of Crohn's disease'

    But, as soon as a registered dietician (he's now in medical school, :( I miss him, & his HUGE wealth of knowledge, especially of the neglected, or lesser known medical problems, or things doctors just flat out ignore, or refuse to acknowledge) as soon as he read my 2003 report, he told me that was the 'gold standard' for diagnosing Celiac's disease, and that my biopsies were basically classic- "Villous atrophy, in some of the biopsies, the villi were almost totally effaced" (and yet some actually said the villi appeared healthy. Others, had atrophy, and others *yet*, were 'almost totally effaced.)

    Anyhow, since a lot of people on here DO seem to have celiac's disease, or gluten intolerance, and some who do not, or have not been tested, are trying diet on their own (best test yet, in my opinion) I thought I would share this.

    I'd be curious to know, if anyone on here is aware of other meds yet, that carry that same warning...

    I'm sure I could just as easily just google it, and may do so, when I'm feeling better.

    Take care all.

  2. mysticbrit

    mysticbrit New Member

    I have celiac and had to find out the hard way that one of the drugs I was taking contained gluten.

    This is a website recommended to me by a rep from the FDA. It lists all the meds ingredients including gluten:

    Hope this helps, Good luck.