posted
Sometimesdilly: What you wrote about the interaction of Provigil with lyme meds makes sense based on my experiences.
Since starting Lyme treatment in May, I've noticed that Provigil does not work as well for me. I thought I had either built up a tolerance after having previously taken it daily for 2 months, or that my herxing was making me so exhausted that the Provigil couldn't make a dent in my fatigue.
But if our lyme meds slow down the aborption and effect of Provigil, that explains a lot.
From your knowledge, would the Provigil work better if we were to take it when we wake up and then wait an hour or 2 to take our first round of abx? I've been taking my Provigil with the abx (omnicef and zithromax) and olive leaf extract I take as soon as I wake.
Thanks for sharing that info with us! Is there a website where we can read that LLMD's explanation of Provigil's interaction with Lyme meds? I'd like to share with my LLMD.
Thanks, Erica
Posts: 408 | From California | Registered: Apr 2008
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lymednva
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Dilly, I'm glad you found a reason for the ups and downs you have been going through. Hope it has leveled off for you by now.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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cactus
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posted
Thanks for posting this very important info!
Another one that's an important caution regarding provigil, and often forgotten: it shouldn't be taken if one has Mitral Valve Prolapse Syndrome.
I think it's okay if one has Mitral Valve Prolapse, but not if one is symptomatic. I'm not sure exactly where the line is drawn between MVP and MVPS.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lymeHerx001
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SAME gave me severe dysphoric mania that I think poisoned my brain.
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lymednva
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posted
MVPS is another name for orthostatic intolerance. When you stand your BP drops and you can begin to feel faint and even nauseous.
I hadn't heard that before. Thanks for mentioning it.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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quote:Originally posted by lymeHerx001: SAME gave me severe dysphoric mania that I think poisoned my brain.
Are you referring to SAM-e??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sometimesdilly
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posted
Erica- I'm not aware of any articles to read about this, sorry.
I think the Lyme neuro doc I saw based his information on his specialized knowledge of the chemistry of various meds and on patterns he has seen in his patients over many years.
Also, i couldn't begin to advise you about how to time taking provigil with other meds.
I can only tell you from my own experience - and have no idea how applicable this is to anyone else--that flagyl has been the only med i've taken while on provigil that caused this transparently bad interaction.
Before flagyl i would have said that provigil has been a 100% positive for me, the difference between being able to function at all or sleeping literally all day.
(((Diva))) thank you. yes, all is explained and my relief knows no bounds. Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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toots- i think she meant same here, not sam-E.. Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Thank you for posting this!!!!! I've been on Provigil off and on for a few years. I also noticed that when I started tx, the Provigil just didn't work. Or even on really bad days on no tx, the Provigil doesn't work.
But lately if I don't take it for a month or two, then start back; it does okay for about a week. Then I REALLY get moody and even more spacey!!!! It's such a double-edge sword! We want so desparatly to have some energy, and then that causes problems or backfires!!! Frustrating!
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Tracy9
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Dilly said:
"thank you. yes, all is explained and my relief knows no bounds."
Oh, I am SO happy for you! Woo hoo!!!
I take Adderall and have no problems with it, for anyone who might be looking for an alternative.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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AliG
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posted
Dilly-
Thanks for sharing your findings. I'm so sorry that you had to find this out the hard way.
I'm really glad that you finally got a helpful answer!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
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posted
(((tx, Tracy and Ali!))
Adding one more thing I'm remembering the doc said.
Sounds like the DOSE of provigil is another variable here too.
I'm taking 400mg a day, at one time(that's a high dose), which he seemed to think accounted in part for what kind of whammy was delayed then delivered.
From what you'all are posting, the other possibility seems to be (possibly because of lower doses??) a delayed provigil may simply get absorbed or diluted or some such, so it never gets delivered at all, as opposed to packing a delayed whallop.
Hmm.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Dilly, thanks for posting this info!! I also have been taking Provigil for quite some time now. I first started taking it daily about a year ago but was not taking any abx with it. After about 2 or so months, I noticed it was not working as well for me, which I contribute to my body building up a tolerance to it because I was not on any abx.
Once I started to notice the decrease in effectiveness for me, my doc prescribed Vyvanse, which is in the same class as Adderal. The Vyvanse has been GREAT for me but has one side effect that is beginning to really take a toll on me, it decreases your appetite tremendously. Since starting it in December/January, I have dropped from 143lbs to 119.5lbs, which is technically "under-weight" for a 5'9" tall smaller built woman.
I now have been taking the Provigil on most days and the Vyvanse only when I know I am going to have a really busy day. I am taking 300mg of Provigil and am also taking Bicillin injections, as well as other supplements. If you find out any more info on this, please post it!! I am very curious to find out more info!! I will try to find more info myself and will post if I find anything!!
Thanks again! Amy
Posts: 73 | From just outside of Lansing, MI | Registered: Jun 2006
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MariaA
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posted
By the way, it is normal for provigil to stop working as well. I used to cut my pills into quarters and halves to get the smallest effective dose, though I don't know for sure that this would slow down the resistance effect.
Maria "I am not a doctor" A.
-------------------- Symptom Free!!! Thank you all!!!!
I think it is a matter of building up tolerance to the med, it happens a lot with various medications. My GP stated that she has seen patients on 400+ mg/day because of sleep disturbances associate with shift work.
I know for me, I noticed a great decrease in the effectiveness after 2-3 months of frequent use. I then switched to the Vyvanse and just recently started the Provigil back up. It seemed to work well for a few weeks but now I am not seeing much effect and I do not want to have my docs up the dose... who knows!
Posts: 73 | From just outside of Lansing, MI | Registered: Jun 2006
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sometimesdilly
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posted
hi Amy-
Who knows indeed?
I'm hoping to drop Provigil altogether, actually. The specialist I saw prescribed 2 meds towards that end-
Lunesta, to achieve deep, replenishing sleep every night so that i am less tired and less in need of Provigilled energy (that's working),
and Namenda, to help with the brain fog/concentration Provigil works on too.
the jury is still out on Namenda, but i can how this game plan might work.
course, whether Namenda is any safer or more desirable than Provigil is a while 'nuther question.
take care- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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you know the deal, no brain injury programming forthcoming, accepted clinically but not funded by insurance or school as of yet.
in the meantime, top ll psych specialist has presribed both provigil and namenda for my ds - i found this post informative and am looking for more feedback, updates from anyone.
he has a history of extreme reactions to many meds, that we will watch. just looking for feedback on how to best avoid this kick-back situation. sounds like a concern to me.
his med list as of now is as follows:
mino rifampin ammox
lexapro lithium ambien CR
had highly significant neuropsych testing results, and severe auditory processing disorder (diagnosed via eval at nyu) so, now to try provigil and namenda.
was described by doc that each of these meds can help with different aspects of the processing disorder.
provigil - focus, concentration, initiative namenda - information processing, ability to streamline focus.
i am struggling with the idea of this many meds, and so is he. but, we have to do something to attempt to get relief from these god-awful symptoms so he can function at a basic level.
i'm also concerned that the provigil may worsen his already horrible insomnia.
m
Posts: 8337 | From the other shore | Registered: Jul 2002
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My neuro rx'd Provigil and I took it for a couple of weeks and then stopped.
Low dose, 100mg. Didn't do diddly. It also seemed to trigger microtremors in my jaw and right arm - the same places that tremor when I get simple partial seizures.
Wasn't on any other meds during that 2 week test run of Provigil either.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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minoucat
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posted
very interesting. I've been taking a loading dose of Provigil in the morning (200 mg for me; haven't tried more than that), then a half pill (100mg) that afternoon, then half pill morning and night for the 2 following days; then a 2-3 day break.
This keeps me from getting nuts but helps me be alert.
I've noticed since I switched to cephtil and zith the provigil seems to have less effect.
I've just added 2.5 cortef am and afternoon into this to see if I can be more lively.
Something better than basically comatose would be delightful. That's my main problem now -- I'm so incredibly tired and slow-thinking all the time. Otherwise, not much body pain or problems.
Mo, good to hear from you; sorry the news isn't better. You've been in my thoughts.
Dilly, thanks for the thread and let us know how you do on Nemanda.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Thanks for this thread! I was trying to get an RX authorization for Provigil, but didn't realize there is a MVP contraindication. I have MVP. My doctor is aware of it, but apparently didn't know or think of it.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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quote:Originally posted by minoucat: Something better than basically comatose would be delightful. That's my main problem now -- I'm so incredibly tired and slow-thinking all the time.
Ditto Minoucat! Feeling half-dead is not fun.
Provigil and other stimulants seem to only work if you have at least a base-line of energy. During herxes and stages of severe exhaustion, taking Provigil is like taking a placebo.
Vyvanse helped me for a few months, but I've either built up a tolerance or am so exhausted from herxing that it doesn't help anymore either.
Does anyone know what a typical dose of Vyvanse or Adderall is? Are these meds less likely to result in tolerance than Provigil?
What is Namenda? Does it help with energy?
Posts: 408 | From California | Registered: Apr 2008
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Tracy9
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posted
Agree with everything in the post above. I've taken Adderall for years, and don't even bother with it if I'm herxing or really bad off.
However it can turn a so so day into a functional day. I think everyone has to play with their own dose. I am prescribed 30 mg of short acting twice a day.
I take a half a pill. Sometimes in an hour, I take the other half. Sometimes one half is enough. Sometimes a couple hours later I take the other half. I go based on how I am feeling and how my energy level is, and it does change day to day.
I will say Adderall has given me a much improved quality of life on days when I can get up and move.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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charlie
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posted
bump^
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kreynolds
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Hey does anyone know if taking Tindamax will cause same reactions???
I know that Tindamax is only one molecule off from Flagyl.....
Just Curious...
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Simultaneous administration of tinidazole with drugs that induce liver microsomal enzymes, i.e., CYP3A4 inducers such as phenobarbital, rifampin, phenytoin, and fosphenytoin (a pro-drug of phenytoin), may accelerate the elimination of tinidazole, decreasing the plasma level of tinidazole.
Simultaneous administration of drugs that inhibit the activity of liver microsomal enzymes, i.e., CYP3A4 inhibitors such as cimetidine and ketoconazole, may prolong the half-life and decrease the plasma clearance of tinidazole, increasing the plasma concentrations of tinidazole.
The major route of elimination is metabolism (~90%), primarily by the liver, with subsequent renal elimination of the metabolites. Urine alkalinization has no effect on the elimination of modafinil.
Metabolism occurs through hydrolytic deamidation, S-oxidation, aromatic ring hydroxylation, and glucuronide conjugation. Less than 10% of an administered dose is excreted as the parent compound.
In a clinical study using radiolabeled modafinil, a total of 81% of the administered radioactivity was recovered in 11 days post-dose, predominantly in the urine (80% vs. 1.0% in the feces).
The largest fraction of the drug in urine was modafinil acid, but at least six other metabolites were present in lower concentrations.
Only two metabolites reach appreciable concentrations in plasma, i.e., modafinil acid and modafinil sulfone. In preclinical models, modafinil acid, modafinil sulfone, 2-[(diphenylmethyl)sulfonyl]acetic acid and 4-hydroxy modafinil, were inactive or did not appear to mediate the arousal effects of modafinil.
In adults, decreases in trough levels of modafinil have sometimes been observed after multiple weeks of dosing, suggesting auto-induction, but the magnitude of the decreases and the inconsistency of their occurrence suggest that their clinical significance is minimal.
Significant accumulation of modafinil sulfone has been observed after multiple doses due to its long elimination half-life of 40 hours.
Induction of metabolizing enzymes, most importantly cytochrome P-450 (CYP) 3A4, has also been observed in vitro after incubation of primary cultures of human hepatocytes with modafinil and in vivo after extended administration of modafinil at 400 mg/day. (For further discussion of the effects of modafinil on CYP enzyme activities, see PRECAUTIONS, Drug Interactions.)
Drug-Drug Interactions: Based on in vitro data, modafinil is metabolized partially by the 3A isoform subfamily of hepatic cytochrome P450 (CYP3A4).
In addition, modafinil has the potential to inhibit CYP2C19, suppress CYP2C9, and induce CYP3A4, CYP2B6, and CYP1A2.
Because modafinil and modafinil sulfone are reversible inhibitors of the drug-metabolizing enzyme CYP2C19, co-administration of modafinil with drugs such as diazepam, phenytoin and propranolol, which are largely eliminated via that pathway, may increase the circulating levels of those compounds.
In addition, in individuals deficient in the enzyme CYP2D6 (i.e., 7-10% of the Caucasian population; similar or lower in other populations), the levels of CYP2D6 substrates such as tricyclic antidepressants and selective serotonin reuptake inhibitors, which have ancillary routes of elimination through CYP2C19, may be increased by co-administration of modafinil.
Dose adjustments may be necessary for patients being treated with these and similar medications (See PRECAUTIONS, Drug Interactions).
An in vitro study demonstrated that armodafinil (one of the enantiomers of modafinil) is a substrate of P-glycoprotein.
Coadministration of modafinil with other CNS active drugs such as methylphenidate and dextroamphetamine did not significantly alter the pharmacokinetics of either drug.
Chronic administration of modafinil 400 mg was found to decrease the systemic exposure to two CYP3A4 substrates, ethinyl estradiol and triazolam, after oral administration suggesting that CYP3A4 had been induced.
Chronic administration of modafinil can increase the elimination of substrates of CYP3A4.
Dose adjustments may be necessary for patients being treated with these and similar medications (See PRECAUTIONS, Drug Interactions).
An apparent concentration-related suppression of CYP2C9 activity was observed in human hepatocytes after exposure to modafinil in vitro suggesting that there is a potential for a metabolic interaction between modafinil and the substrates of this enzyme (e.g., S-warfarin, phenytoin).
However, in an interaction study in healthy volunteers, chronic modafinil treatment did not show a significant effect on the pharmacokinetics of warfarin when compared to placebo. (See PRECAUTIONS, Drug Interactions, Other Drugs, Warfarin).
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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kreynolds
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posted
AliG:
Thanks for the find! I wish I would have seen that 3 days ago!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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AliG
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posted
Sorry K,
I've been a little distracted lately.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
It's ok, sometimes you gotta learn the hard way right?
Thanks for all that info!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
I started namenda about six weeks ago. I noticed an improvement after two doses!
Now, I feel happy! I can think. I can use complex words. I have an interest in sex! I get along with my husband.
I am doing so good, I am freaking out a bit. I'm not feeling high or weird. It's just that I don't ever remember feeling happy and being so functional psychologically. All my psych meds have got me to a point where I'm stable and i thought I was doing great. Man, all of them combined (inc. provigil) don't hold a candle to what namenda is doing for me.
I daresay I think I feel normal? I don't know what normal is, but I think there are people who feel like I do on namenda, but naturally. They are the people who light up the room when they walk in. The people everybody wants to be friends with because they are so positive. You could strap them down and torture them and they would still whistle a happy tune. Ok, so I exaggerate a bit...... You get the idea.
I still get my monthly herx....but it doesn't seem to hit me as bad....but it hasn't been very long I've been on the stuff. Only time will tell how my herx's are going to be on namenda. Even when I was physically down with a herx this week, I was still happy. The misery didn't get me down. I'm too happy?
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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namenda about six weeks ago.
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