This thread is now closed.
Emily
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NO MORE POSTS, PLEASE
I guess they want people to keep hashing out peoples guess work and opinions.
As for my statins the doctor would have to take them from my dead lifeless body unless my liver enzymes went way, way up. Heart disease - liver disease it's all a crap shoot which one is going to get you in the end.
None of us are going to live forever even though we keep on trying for some obsessive reason, what a scary thought ;)
for those interested, I've written a primer on drug interactions to help folks understand the P 450 landscape.
http://www.medhelp.org/user_journals/show/315468/Drug-interactions-in-the-liver-101
News flash to all:
I guess I'm not the only one alarmed by the degree of interactions with the new regime.
Having just come from my clinic, where I met with 2 of the docs yesterday, they are postponing treating all patients until they install the latest software (from GE, or called GE, I didn't quite get that part.)
So they are waiting for their IT guys to finish the installations. This is delaying treatment and has some patients really miffed at them.
Patients who no doubt don't understand the issues.
Me, I'm happy....I read enough to scare the crud out of me, so I'm glad to see that they realize they will have to tailor tx individually, and keep a close eye out for their charges.
Statins were mentioned in particular, folks will have to suspend their use for the 3 months they use the PI.
Of course many other things will need dose adjustment and/or close monitoring.
Anyway, if a whole clinic of doctors is making their patients wait just so they will understand and be on top of what I've been taking about here, it makes me feel less apologetic to all the detractors....no offense. : )
Thank you for bringing to our attention. Now I understand why they keep asking me what my meds are over and over. Every time we communicate they recheck. Also you can find the information on the ack of the Incivek dispenser, it looks like it shows all meds and how it affects either up or down
Thank you again.
I did notice a difference at first with xanax but have now down graded for the difference
Thank you again for helping to bring thee important items to our attention. I am having enough problems without giving myself more.
heres a helpful link for telaprevir...not a full list but the ones they've found so far.
I also like that if you float your mouse over any drug on this list it will tell you whether or not the PI increases or decrease the strength of the drug you are pointing to.
Of course, this doesn't mean that something not on the list, that utilizes the same cytochrome, could not cause issues.
Remember every other drug using that same cell is competition for the PI.
http://reference.medscape.com/drug/incivek-telaprevir-999658#3
I checked drug interaction softwares....some are too new to have the info....your pharmacist and hepatologist should have the most up to date info.
Be sure to tell them EVERYTHING you take, including vitamins and herbal supplements.
mb
giggle, well if I read all 200 studies you'd have a point....I tend to be looking for specific info
and speed read...that day I was looking for pro drug transporters if memory serves and happened to surf for teleprevir interactions on the side.
the drugs mentioned are for transplants and are examples of extreme reactions.
However, if anyone recalls I tried to bring some of the reseach in here years ago which showed lists of drugs which interact on the same cytochrome.
here again is that link
http://medicine.iupui.edu/clinpharm/ddis/table.aspx
please note that research listed at that time (2 years ago) that strong inducers and inhibitors were those that caused AUC changes of 2 fold or more.
or 80% changes in clearances
However, at that time, the actual numbers were unknown as to the actual levels of increase on many drugs
AND , or course, the chart does not include info concerning what happens for specific drugs alone. In the case of teleprevir there are marked effects on the other drugs using that cytochrome,
again, those marked effects can be dangerous, and even more dangerous if the patient has late stage liver disease. The less healthy tissue the more imperitive you try to pick meds using other cytochomes while on the chemo.
Also please note the BENZO classifications listed are using the same cytochrome.
If anyone can find me a more up to date chart I would appreciate it, since this chart hasn't been updated in 2 years. For that reason I've been searching for studies on each individual drug with the teleprevir.
as for the CYCLOSPORIN, well yes it is used for transplants, but a whole host of other things as well. Skin conditions, eye drops, for arthritis, gastro issues...etc...so its one more than a few folks might be using.
In my mind it makes sense to get helper drugs that won't cancel out the chemo, or build up and not clear the system.
remember this chart is only a PARTIAL list of drugs that use CYP34a.
My method is to google a drug and then CYP, or drug and P 450, either wy will get you to studies about your drug, and which liver cells metabolize it.
mb
Thanks! We are checking this out.
Emily
it was in the thread "should I take shot five tonight", the vasculitis post was correct.
I posted mine about an hour ago when I posted and the thread didn't go to the top, I have another one in the thread titled vasculitis that is also incorrect.
-Dave
Merry and Spectda -
I heard from Mike that he posted to this at about 8:20 am today, and it's showing 7 hours ago (it's now 10:35 am ET). I am showing your posts at 6 hours ago, which would be about 4:30 am ET. Are those accurate? If they aren't, do you remember an accurate time that you posted? Even a good guess would work.
Thanks!
Emily
You can't prepare for every eventuality. The medication are generally fairly safe and most us survive them if not a little worse for wear (and of course some a lot worse for wear).
Visiting 200 sites a day is very telling in itself. It's one thing to advocate for ourselves, be careful and well informed and it's another to obsess about it. We know these meds are nothing to be taken lightly. We take them because our disease can often be worse then the meds. You just seem like your anxiety is off the charts. I don't believe in putting my head in the sand, but at some point I took the freakin meds and just hoped for the best.
-Dave
The 2 drugs mentioned in the article are tacrolimus and cyclosporine. These are calcineurin inhibitors and are used almost exclusively in organ transplant recipients to prevent organ rejection.
So basically we're talking about transplant physicians and they have been informed of this issue myriad times. This dangerous drug interaction is very unlikely to slip through the cracks. The liver transplant physician on our expert liver transplant forum - Dr. Thomas Schiano - has mentioned this issue on at least 2 occasions.
I know they are benzos. and I did read it...but I just went through half my history for that day and eyes are glazing over...
50 studies and still looking...nevertheless I did read it...it effects ambien too...lipitor..about 100 drugs but the lists vary from study to study.
I'll try to relocate the study but it's not easy to retrace my steps as I sometime visit 200 sites a day.
I'm 90% certain it was downregulated, but for your sake I'll try to locate the abstract.
define overly alarmist.
ok, not a pharmacist?? well, me neither...point is, the one drug in the article had 2 studies...one showed a 70 fold increase, one showed a 30 fold..in that one drug.
I don't do the studies and don't claim to know why even the chemists get conflicting numbers...but even a 2 fold increase is enough to make someone very v sick or worse.
so no, if some drugs are that much stronger, please God, let me err on the side of caution.
of particular interest is Vertex's own literature which names METHADONE and the majority of ANTI-DEPRESSANTS as possible concerns for similar reasons.
also HIV drugs and anti-rejection drugs, a few of them ALSO...AND for the transplant patient treating after transplant they are in an extremely delicate situation to start with..
since many HCV people have to use some of these classifications, it is VERY important.
It also matters whether a person is late or early stage disease.
The more advanced ones disease, the more attention should be paid.
CYP34a is the cytochrome in question, it's the cell that processes the PI drugs.
the more damage to the liver the fewer cytochromes a person will have left, of any kind.
Think of it like seats in a car. Let's say teleprevir takes up 5 out of 6 available seats...do you try to pack 10 more people in....or do you ask them to ride in another car??
If you choose the meds that utilize other cytochromes it's like moving the extra 10 people over to 2 or 3 other cars...and hence no one car becomes so weighed down that it's motor will blow up from the sheer weight.
That's the best analogy I can think of.
in my case, stage 3/4, it means I will be best served by finding alternative drugs that don't need to utilize that cytochrome so that my liver can deal with the PI without interferance, or overload/overdose.
I attempted to bring the P450 information in here a couple years back, but now that so much more is known, perhaps patients will start asking their docs to pay more attention.
Since we have a host of cytochromes (different drugs are metabolized by different cytochromes,) there is a way to balance out the medications and deliver a far lesser risk to a sick liver.
The same applies to surgery, I was told one surgery could easily push me into liver failure, so I take what the doctors tell me and the research they are doing seriously.
mb
PS...it doesn't hurt to recheck interaction ourselves....my hepatologist and pharmacist both missed one last time around, even with their new computer software which uses Dr. Flocharts research etc....and it was scary, as reactions can be life threatening.
. It was an antibiotic...and that was with dual therapy....with the PI some of the antibiotics have issues too...cyclosporin for instance...so I'm just offering this up for those who wish to cross all their t's and dot their i's.
It definitely is a rabbit hole Trish, I'll grant you that.
LOL! I know Aaron....one day someone said the familiar "Danger, danger Will Robinson!" and Roy Orbison came into my head instead and it stuck. That's what it's been ever since to me. Sometimes...I think Alice and the White Rabbit would be quite at home inside my brain. :-\ You still have your sense of humour.....so it's all good, Aaron. You're doing amazing!! Cheers to you.
Trish
Hi Trish .. that should be ... "Danger danger Will Robinson" : )
The robot from the TV show "Lost in Space" famous line ... hmmm .. wish I had one of those robots ! .. definitely feels like "lost in space" while I'm Tx ... ha ha ....
"for this reason I would make SURE your doc looks up all new drugs...
get your meds from you hepalologist rather than your GP as much as possible,
as they will be more aware. "
I would hope that nobody would be taking anything at all, old OR new drugs, without consulting with their hepatologist/ treating GI while on treatment in the first place and get it cleared before it's taken and that goes for over the counter meds as well. Rule of thumb has always been not to introduce anything during treatment that isn't discussed with your treating specialist and not to take risks on introducing things where the interactions are unknown and might be detrimental or take away from the effectiveness of the treatment drugs.
Furthermore, my own GP would never have prescribed me something without first consulting with my treating hepatologist. They kept in communication as needed. I think it would be a reckless GP that would ignore the fact their patient was on a treatment regimen with other drugs and prescribe willy nilly.
I don't have time at this moment to look up the telaprevir/incivek or boceprevir/vitrelis drug inserts and read them, however I'd be very surprised if the drug companies themselves were clueless about this information and I've got some vague recollection of having seen some mention of cyclosporin with regards to cautions before.
I do think you're being overly alarmist, since the practice already is to proceed with caution on the part of a Hepatologist with a treating patient. Caution, certainly...however I think you need to calm down. The information about this drug is useful and thanks for posting it however I think your "Danger, danger Roy Orbison!" approach is overdoing it and a little coolheadedness would be useful here.
Trish
"The one they had me on for the riba shakes last time was lorazepam, this drugs potency is cut in half by the telprevir so this will effect dosage needed.'
That is incorrect. Benzodiazepines, which lorazepam falls under indicate that concomitant use of alprazolam and telaprevir INCREASES exposure of alprazolam, thus INCREASES the potency of the benzodiazepine. Clinical monitoring is warranted. The medication guide only mentions alprazolam.
The only thing scarier than the truth is incorrect information.