Anti-Fatigue Drug

[Micro2]

After 92 weeks  I was unable to continue tx. I did not get rid of the virus and told to wait for a new drug. Life goes on...or so I thought. Its now about 21 weeks post tx and I am still plagued with lots of fatigue, body aches, and some pretty heavy mental fog. Docs keep saying this will clear in time. I keep asking for names for this condition like chronic fatigue syndrome and or fibromyalgia and or post viral syndrome as all of these fit where I am at. They just keep saying that this is from the heavy med assault on my body. 2 docs want me to try Provigil. Its a central nerve system stimulant. I tried it once during tx and it scared me. My mind kept going but my body wanted to stop plus it had that old amphetimine feeling which I had not felt in 19 years. Anyway...I am now on a very low dose and it seems to help. I am still unsure about using this drug. The hepatologist said its like beating a dead horse. Has anyone else heard of or had any experience with this? This probably sounds weird so PLEASE use for other post as desired.

[ShoshanaPNW]

I notice that this is a thread from 3 years ago so it might make more sense to start a new one.

[whinybutwell]

However, you take what you need to when you need to.  I may be on it before too long, if my fatigue doesn't improve, and appreciate the medical info about the drug (whatever a superchiasmatic nucleus is).  Does anyone know of ANY actual studies of long term side effects of interferon and/or ribavirin?  My doctor does not believe that there are any (side effects that is, or studies for that matter)...even though i'm almost 6 months post-trx and still suffering.  Does anyone know of a good hepatologist or gastroenterologist in Austin TX?

--whiny

[whinybutwell]

I live in Texas (TX), so in the treatment field here we use "trx" for treatment, instead of tx (for Texas, of course)!
Thanks for the acronym update though...very helpful.  Also, Provigil may or may not be addictive, but they didn't think amphetamines were either when they first came out.  Also, i'm so wary of taking more drugs for sides that were caused by drugs in the first place....where does it end?   Aarrggh!

whiny

[ShoshanaPNW]

Provigil is NOT related to cocaine. It is not a "stimulant" in the sense that cocaine or Ritalin is. It is not addictive. Pilots may use it. It appears to signal the superchiasmatic nucleus, which sets your biological rhythm, to be alert.

[geterdone]

Here is a complete list of acronyms

HCV Hepatitis C Virus
CHC Chronic Hepatitis C
AHC Acute Hepatitis C
G or GT Genotype
GI Gastroenterologist
SOC Standard of Care
ITT Intent to Treat
Tx Treatment, Therapy (can also mean Transplant)
Bx Biopsy
Dx Diagnosis
Sx Symptoms/Side Effects
Rx Prescription
Hx History
RVR Rapid Virological Response (4 Week PCR - UND
EVR Early Virological Response (12 Week PCR - UND or >2 Log Drop)
EOT End of Treatment
SVR Sustained Virological Response (UND 6 Months post TX end)
PCR Polymerase Chain Reaction
RT-PCR Reverse Transcription-Polymerase Chain Reaction.
TMA Transcription Mediated Amplification
BMI Body Mass Index
WHR Waist to Hip Ratio
VL Viral Load
HVL High Viral Load
LVL Low Viral Load
UND Undetectable Viral Load

Drug Acronyms
IFN Interferon (Alpha 2a / Alpha 2b)
NPIA Non-Pegylated Interferon Alpha
PegIFN Pegylated Interferon (Alpha 2a / Alpha 2b)
CIFN Consensus Interferon (Infergen/alphacon)
RBV Ribavirin
Riba Ribavirin
EPO Erythropoietin (Epogen/Procrit)
Neup Neupogen

Blood Test Acronyms
FBC Full Blood Count (same as CBC)
CBC Complete Blood Count (same as FBC)
LFT Liver Function Test
ULN Upper Limit of Normal
LLN Lower Limit of Normal
ALT Alanine Aminotransferase
AST Aspartate Aminotransferase
ALP Alkaline Phosphatase
GGT Gamma Glutamyl Transpeptidase
LDH Lactate Dehydrogenase
SGPT ALT used to be called Serum Glutamic Pyruvic Transaminase.
SGOT AST used to be called Serum Glutamic Oxaloacetic Transaminase
RCC Red Cell Count
HGB Hemoglobin
Hemo Hemoglobin
WCC White Cell Count
MCV Mean Corpuscular Volume
TSH Thyroid stimulating hormone (Also called: Thyrotropin)
TIW Tri Weekly (Three Times a Week, Thrice Weekly).
IU International Unit

[drofi]

Quote: "What the heck is tx"?

In Germany Tx is the acronym for transplantation. Different languages ;-) ....

[drofi]

In Germany the German Fatigue Society is running a study with methylphenidate to treat fatigue after cancer treatment, if anaemia is not the reason for fatigue
http://tinyurl.com/yvm5sa
There are single anecdotal reports about a benefit for Hep C fatigue too.

[Rachael-e-poo]

What the heck is tx?

[Sam Hall]

Oh dear a bit of a come down one wonders? That's one of the problems with stimulants they often end with name calling and handbags at dawn.
Never mind pop a couple of uppers and you'll feel grand about youself.
MrS Hall been there done it all

[Sam Hall]

dy'know i posted to draw attebntion to the promotion of drugs regardless of the least bit of evidence to support thier use with people with hcv and all i got was juvinlle response .I as i saw it produced the medical concerns re this drug and they were ignored. The only response i got was more name calling in the contexed expeced of those with LOW FRUSTRATION TOLERANCE.
I as a mtter of course wish them well with thier battle against this virus ,but warn that to promote the use of any un-researched drug is irrisponsible.
If they want to call me names like jackass ,mule etc expect to get it back with interest. The plumbs.
Sam Hall willing to listen to all

[Califia]

Most stimulating debate, indeed.  The point is well taken about the many dangers of uncritically embracing pharmaceutical drugs simply because they are sanctioned by the medical establishment--which, as we know, all too often places expediency above the Hippocratic standard of "First, do no harm,"  and is encouraged in this by a powerful and pandering drug industry.   Michael, I truly appreciate your need to overcome tx fatigue and function as before.   But as someone with a damaged liver, I freely admit to a deep-seated fear of adding to the chemical overload.   We are exhausted and depleted BECAUSE we are overstimulated.   Everyone on tx is in a state of CNS and adrenal overload.   Knowing this fuels my fear of medicating the side effects that are themselves produced by other medications...an endlessly repeating loop with diminishing returns.  I truly hope Provigil goes easy with you,  and perhaps it will, but I wonder if some investigation of benign alternatives might not prove worthwhile.   Acetyl-L-Carnitine?   More exercise?   I will refrain, of course, from suggesting any research on Cordyceps.  

[Sam Hall]

I will be the first to admit to the desire to ecape the unwanted feelings as you have described and i think New Sojourns post just about sums it up.
When i was on tx i squealed like a stuck pig for diazepam to control my riba-rage and i speak from first hand experience of almost all substances but i wish icouldn't.
But one point that has been made is when your body is saying slow right down in this game i think it is really wise to listen.
I worked all the way through tx and again i dont think thta it was always the best thing to do. I needed at times to lay down and relax. It was ok to get up and out most of the time but as i say body knows best.
S Hall

[Sam Hall]

In the firts instance i dont believe that anyone was suggestihg that prov and cocaine are the same drug .
Secondly i am not on any high horse, you see i have ridden them many times and fallen and learned.
You hve not answered the fundimental question of wether the use of the drug you promote has any adverse reactions for people with hcv. there appear to be many warnings about its potential for dependence yet that for you seems of little concern.
As for thhe theory that its use will increase the possibility of people compleating tx.Where is your evidence.What studies have been made to show that this is the case?
You use the dramatic example of how crack has been such a devastating problem by refering to the most poinant examples but again i dont think that anyone is suggesting for one second that the two drugs are one in the same except that they are cns stimulants and are used to avoid tolerance of feelings/emtions associated with discomfort.
Drink lots of water ,rest, keep a sense of humour and avoid making your liver work overtime.

Mr S Hall

[MichaelT]

Sam - get down from your self-righteous high horse, because falling off is a *****. You don't know me or my circumstances to be able to make any kind of comment about ProV being indicated or not. I shan't boor you with the intrinsic details, but in general ProV certainly has tipped the scales in my favor, augmenting anti-depressant medication.

Does my positive experience turn me into a ProV Evangelist? No. But I had difficult 48 weeks of combo and if there are meds that can help someone tolerate treatment better so to complete treatment, buddy, I'm for it. In some circumstances I would advocate careful use of some drugs with high addiction potential, Oxycontin for example. ProV isn't even close to that category.

Cocaine use same as provigil use? Come on, people! There is a profound difference between the two. Person A smokes some crack, Person B pops ProV... 5 minutes elapse... Person A (who no longer has any money) is trying to sell his or her baby to get more crack. Person B (who suffers from sleep apnea and is often very fatigued) still has to wait another hour and then will become more alert and focused. Person B never has the desire or need to go to great extremes to obtain another "fix." It just doesn't happen and it has no bearing on the issue whether ProV is legal/illegal or affordable - because, say it with me, Provigil isn't cocaine. Cocainism is terrible and a devastating thing. The U.S. has experience with legal and freely available cocaine and there was a terrible social cost. ProV, one more time, is not cocaine.

Some of you need to quit swimming in the pool of relativism.

Ritalin is very similar to cocaine so, damn it, there is an effin' reason to be extra cautious in employing it, esp. for reasons: 1) coke is miracle grow for the hcv and 2) for former cocaine addicts.

[Sam Hall]

You again avoi the asic point,that there is as yet no reseach to lookthe effects that this drug might play in the progression of the disease hcv. Yet at the same time you are prepared to promote its use.
So here is a drug that you claim through anecdotyle evidence(you an acouple of mates)can enhance the Qolof people on tx yetthe fact that any adverse or damaging effects because of the lack of research are of little or no significance.
You say;
"People suffer. If there is medicine that can improve QoL, level of functioning, reduce the pain, in a responsible fashion, I'm behind it"
Anyone going through tx will likely suffer discomfort fatigue being a major sx. You promote the use of a drug which carries many warnings about potential physical side effects and a real danger of dependancy.
I have read many reports and claims regarding drugs that will help with tolerance of tx but none hsve proved of great success  so far. This oneis just a Drs attempt at giving you the little lift you think you need.
I say if thats's what you want fine but this site  really is  about people looking for a healtyway to repair thier health.

Also don't call me a mule again,you called me ignorant in a previous post and i will not tolerate to much purile put dowms before you catch the edge of my tounge. You want civilised debate fine you keep slipping in the put downs and i will takeyou to the *ucking cleaners.Do we understand each other?
My name is Sammuel Hall an hate you one an all.

[MichaelT]

Jeesh! Never called ya' ignorant, you jackass. You've received a careful opinion that reflects <i>the way the world works</i>. By your criteria NO medicine would ever be employed. So (never "spoke" like this on the forum, before, children cover your eyes) you can go **** yourself with a rusty knife, Sam I am.

See you in next life, and don't be late.

Congrats, *****. Someone has finally pissed me off where I'm stooping to name calling... and I kinda' like it!

Don't bother replying, my time will be spent well in the service of my master and not playing games with you. Hey, read a ******* book or two.

[MichaelT]

"If I came on here and told you all that I sometimes take cocaine because get really exhausted by the end of the week, I can imagine the self-righteous and shocked comments i would get. Why is it different if I take Ritalin or Provigil?" looks an equivalence is being made here, no?

SH, you are asking for things we know don't exist. And gosh darn it doesn't exist for... oh, heck, let's just call it an even zillion meds. So, where does that leave us? Since there are not absolutes with meds and people, we must rely upon what we do know about the med in question and look to the general case and not the fringes.

To cut short the lesson for today, the message is that Provigil has promise to help people that are fatigued due to treatment or the effects of treatment if you will, apart from circumstances such as anemia, which should be addressed directly than a re-evaluation of the persons level of functioning and QoL. But you know this, so why play the stubborn mule? Does it amuse you?

People suffer. If there is medicine that can improve QoL, level of functioning, reduce the pain, <i>in a responsible fashion</i>, I'm behind it.

[new-sojourn]

No difference @ all.  What I can't understand is why we have created a society so whacked that the only way to'endure' it is w/some magic little pill the MD's Rx.  the pace is so unnatural, people need 'stimulants' and so 'stressful from over stimulation', people need mood altering drugs, ADs etc.  just to get bye.  And then we created a medical system that is dependant on Rxing these drugs to exisit.  And can only exisit by exploiting and impoverting the masses.  Look to the top for the real pushers--legal drugs, legal alcohol and legal nicatine.

Sometimes, you're suppose to slow down.  Sometimes you are more tired-fatiqued-than @ other times in your life.  Heuy Lewis song 'I need a New Drug' is a joke, not an anthem.

[britgirl]

I also find it strange that some people who are so, so "anti-drugs", in a country which tries to be "tough on drugs" are so willing to swallow "medication". It's almost as if the fact a doctor prescribes it makes it OK. Do we leave our brains behind as soon as a doctor reaches for his prescription pad? If I came on here and told you all that I sometimes take cocaine because get really exhausted by the end of the week, I can imagine the self-righteous and shocked comments i would get. Why is it different if I take Ritalin or Provigil?

[Sam Hall]

Notice that? and remeber the very important warnings re contrception re-Riba....no? didn't read the label?
Pregnancy

[Sam Hall]

Just for the record
Provigil

Category
Central nervous system (CNS) stimulant


Description
Modafinil (moe-DAF-i-nil) is used to help people who have narcolepsy to stay awake during the day. Modafinil does not cure narcolepsy and will only work as long as you continue to take it.

This medicine is available only with your doctor's prescription, in the following dosage form:

Oral
Tablets (U.S.)



Before Using This Medicine
In deciding to use a medicine, the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. For modafinil, the following should be considered:

Allergies

[Sam Hall]

Listen boy the problem of and the meaning of "addiction" are certainly not about the way a drug is metabolised, there are manifold reasons how  an individual becomes "addicted" or dependant on a drug.
The problem with your loose talk is that you without doubt would not be able to produce any researh as to the affects of this drug in relation to hcv its histology,or interactions with pegalayted interferon, Ribaviron or the processes of fibrosis because there simply have not been the studies. Primarily because those prepared to px such expensive treatment usually live in hope that the patient will have the common sense to avoid possibly damaging drugs and just stick to the regime.
You or your budddy also described how they could not get up/on with the day without this drug to me that smacks of psychological dependance.
PS to insinuate that i am ignorant is in my books is an invatation to an arse kicking party. I will be happy to oblige.
Mr S Hall
Is that restrained or what?

[MichaelT]

Crack cocaine is astronomically more addictive than eating cocaine by dint of most of it hitting the brain all at once. Modafinil is very different than cocaine structurally and in how it functions. It certainly is not smoked. Alcohol is not a stimulant.

So now you are informed and shouldn't make similar comments in ignorance.

[cuteus]

I think that SH was addressing the fact that the lack of research on some of these drugs, leave a lot of unknowns, they could be as bad as crack and whiskey.
my interpretation of his commnent.  reading SH is an acquired fun skill. he will correct me if I am wrong.