posted
I just "googled" Ketek and about 20 websites popped up of lawyers advertising Ketek damage to liver lawsuits. That does make me a little nervous.
I know you are supposed to check your lived check (every 2-3 weeks) while on the medication but is that 100% effective in ensuring that you will not have permanent liver damage?
Posts: 14 | From New Jersey | Registered: May 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Why?????
Millions of people are on this worldwide, you take it get your liver checked after 5 days to see if you can metabolise it and then checked every 3-4 weeks. Also some of those cases apparantly where confined to one hospital and my LLMD says they believe there was a batch contamination.
You would see just as many people lose there Gallbladder to Rocephin of similar problems with other AB's so considering Ketek is the drug of choice take it and just get your liver checked.
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Why?????? you say, It is not as simple as you say this, just take it, no, it is not that simple, that is not what Ketek is about, it is very worrisome.
this person has every right to be concerned about Ketek. It is a newer drug, and some have died from it.
We dont know how safe it is, and even if the liver checks out ok at this time, what about 1 year from now. This is something I would def check out before taking it.
I dont believe it is anything like taking Rocephin and loosing your Gallbladder, some have died from Ketek.
I am worried about taking it. I want to take it because of the great results I have heard some have had from it. But I also know that some have had ski high liver enzymes, or liver problems, in the lyme community.
Please dont make it sound so simple to this person, it is not, maybe it is for you, and you are not concerned with death, others are.
BETTER to be safe, and to feel safe on something, and talk about your concerns, which this person is,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Rianna,
Some people here on Lymenet had serious liver damage from Ketek, so I think your comment is a bit insensitive to say the least.
Ketek can be a very good antibiotic for some people, and it was for me for the short time I could tolerate it; however, I think people are justified in being cautious with this drug.
Also, you really can't compare losing a gallblader to losing your liver. You can LIVE without a gallblader, you CAN'T live without a liver.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
My llmd just stopped prescribing Ketek due to liver issues.
Although I had great results with this drug, I believe it is to risky to continue using it.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Ketek is prob my favorite abx in that it helps me feel close to normal with no side effects.
My LFT's stay normal while on it but i dont drink, do tylenol and i do lots of liver protection.
I pray it is never taken off the market.
But, definitely, folks should be advised of it's potential liver toxicity and followed closely.
Posts: 211 | From NC | Registered: Dec 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Rianna,
You are incorrect. There was a cluster of non-Lyme patients in one area that died or had severe liver damage from Ketek within a matter of days of starting it.
I am a Lyme patient on the entirely different coast who had severe liver damage from Ketek. My biopsy showed I was already in liver failure. My liver damage was so severe that it continued even after I stopped Ketek.
Ketek was the only antibiotic I was on - I wasn't on any other hepatotoxic medication. I did not drink one drop of alcohol. I took liver protective herbs. My story is well known here on Lymenet, you can look in the archives.
The Wall Street Journal has written several excellent articles about Ketek. It has been proven that the safety studies in Europe were fraudulent. Those doctors who lied about the results are now in jail. The U.S. FDA approved Ketek based upon the fraudulent European studies.
Some LLMDs have stopped prescribing it. My LLMD now recommends that patients on it have their liver enzymes checked every two weeks.
My hepatologist believes it will be pulled from the market.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
If you read my post it did say
You get your LFT run 5 days after taking it to ensure you can metabolise it and then ever 3 weeks or so.
WIth regard to Liver problems I can only go on what me LLMD told me which was the following:-The Ketek risk is overblown as after being out for 8 years in Japan and Europe and in the US for 1 year, there were no significant liver issue. In 1 1/2 months in the same hospital in North Caroline, there were 3 cases. Likely a contamination, maybe purposeful. I usually check LFT's after 3 days, 2 weeks and then every month.
Again I can only go on what I am told, we do not have a problem here in the UK and 'Dont shoot the Messanger'
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Riann,
I don't mean to sound like I'm shooting the messenger. Obviously, there have been different track records with Ketek in Europe versus the U.K. The U.S. FDA has a poor track record in terms of keeping medications off the market that can cause damage, so it sounds like they did not do their own safety studies.
My point is that I am nowhere near North Carolina, yet I had the same experience as some of those non-Lyme patients. If contamination was involved, then it certainly was more widespread than just that one hospital in North Carolina.
And I did and do get my liver enzymes checked frequently. In fact I get it checked every week now.
With me, once the damage started, it continued very dramatically and rapidly, and continued weeks after Ketek was stopped. I have since read that Ketek does have the ability to continue liver damage even after being stopped, and that when damage occurs, it is very fast. That's what happened to me. Having liver enzymes checked regularly did not prevent my situation.
Anyway, several people here on Lymenet and elsewhere have experienced very elevated liver enzymes. I don't know if they experienced the degree of damage I did.
But if it could happen to me, I'm just saying it could happen to others.
And it's a shame, because Ketek has been the only antibiotic that started helping me feel dramatically better - at least for a short period of time.
But it wasn't worth the price I paid in terms of my long-term health. No one should have to be told they are going to die of liver failure, need a liver transplant and be on immunosuppressive drugs the rest of their lives and have the tick-borne diseases run rampant because of it. Yet that's what I was told for many months as I was trying to recover from this. Now I am very limited in terms of which antibiotics I am allowed to use.
By the way, my incident was reported to the pharmaceutical company by my hepatologist. So maybe when LLMDs ask the pharmaceutical company for cases of liver failure in Lyme patients, they at least will have my case history to consider just for a more balanced analysis.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Thanks Jill for giving this info as it is important to get 'real' feedback.
posted
My husband is on Ketek, he's been on it for 10 days now out of a 30 day prescription.
He's had his liver checked twice, so far so good.
None of the below posts indicate how long someone was taking Ketek before they encountered negative liver enzymes.
Are people running into problems after 1 week, 3 weeks, a month, 6 months, a year? I know everyone will respond differently, but it would help to know. Thanks
Posts: 3 | From San Diego | Registered: Jul 2007
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1Bitten2XShy
Unregistered
posted
My LLMD too stopped with Ketek, although he also stated it was a great drug...he just did not feel it was worth taking the risk with all the other problems we Lymies face.
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