Please, people, let this post be a reminder.... DO NOT be afraid to seriously question what doctors and nurses are prescribing... they DON'T always do what's best for you!
Thanks largely to supplements, PEMF, and giving up alcohol, Jake has made HUGE strides in recovering from Cirrhosis. His MELD score has gone from a 28 to an 8 (it could be even lower by now, we will find out in a few weeks). His ascites is almost completely gone, he has regained almost all of his weight, his mood is back to being cheerful, he no longer has back pain (I think the PEMF has been a HUGE help with his back pain... right after he started it, he stopped seeing the chiropractor). You can read more about PEMF and how it helps people with Liver Disease, HERE.
It seems that almost all of his cirrhosis symptoms have been getting better, but there is one thing that seems to just keep getting worse and worse.
The thing that really stands out, which he is still grappling with is: He looks much older than he is. It has a lot to do with the fact that his skin has become VERY dry and dehydrated, despite the fact that he said he drinks a ton of water at work. His skin texture is so dry, it makes his eyes look very "sunken in." This is disturbing to both me and Jake. People are starting to mistake him for my Dad, and his son for his grandson! It's particularly difficult for Jake to hear this when he's been working so hard at getting better, and he FEELS good, but the outside of his body just doesn't reflect that. It kills me, because I remember on the day before he had his second major bout of encephalopathy, his skin looked GREAT. It was glowing and healthy looking (which is why we didn't suspect he would wind up with encephalopathy AGAIN, right after he got out of the hospital!!). 
Today I got a glimpse of his tongue, which was cracked like a dried up desert floor. This picture on the left is my husband's actual tongue (the pic of the eyes, above, is not my hubby but it looks very similar). The sight of his tongue shocked me so much, I blurted, "What the hell is going on with your tongue???!?!" (sorry but it freaked me out!)
Tonight I spent some time doing some research to try to figure out what could be causing the dehydration in his tongue... I suspected that whatever it was, might also be causing his "sunken eyes" too.
You can see a list of Jake's current medications, and the amount he's taking, by clicking HERE. But to give you the basics, he's still taking Spironolactone, Furosemide and Lactulose, which are all very well known diuretics (but unbeknownst to his doctors, he has cut his dosage down quite a bit for these 3). He's also taking Digoxin for his heart.
The last prescription med he is taking is called Pantoprazole (aka Protonix). And I have a LOT to say about Pantoprazole... If you have liver cirrhosis and are taking this medication, you need to keep reading this!!! (or at least, scroll all the way down).
The last prescription med he is taking is called Pantoprazole (aka Protonix). And I have a LOT to say about Pantoprazole... If you have liver cirrhosis and are taking this medication, you need to keep reading this!!! (or at least, scroll all the way down).
Because someone gave Jake the impression that Pantoprazole is like an antibiotic and will "help his stomach," he's been faithfully taking this medication, even though neither of us have been entirely clear on why he needed it, or needs to continue taking it (UPDATE: it is not an antibiotic but I think he got the impression it is like one because you're not necessarily supposed to be on this for a long time... this was prescribed to him to prevent esophageal bleeding. Please note that there are risks to TAKING Pantoprazole as well as risks to stopping it. Only you and your doctor can decide that. I feel Jake was at a low risk, but your case could be different).
Jake's stomach gets upset on occasion (by the way, Probiotics has helped him tremendously with this... you can see my post about probiotics HERE). But overall he didn't seem at risk for a stomach ulcer or intestinal or esophageal bleeding. When the doctors examined his esophagus way back in December, it looked great, and they told us there was no need to to put a band on his varices. Again, this was NINE MONTHS AGO.
I googled "cracked tongue" and "pantoprazole" but only found someone taking Omeprazole complaining about this "cracked tongue" thing. Well, in comparing the two drugs, it seems that they do the same thing. They are both used to prevent gastrointestinal ulcers. Which seems ridiculous because again, no one told us he has an ulcer or is at risk for having an ulcer, and in addition, in studies in rats, Pantoprazole was shown to be a carcinogen, and it caused them to develop rare kinds of gastrointestinal tumors. That's nice, docs. Take a patient who you think is at risk for an ulcer, and one-up that by giving him something that's going to cause a tumor instead.
Also, some people said Pantoprazole gave them very dry skin.
I know Jake is on several different diuretics, but he's cut them back (mostly on his own). For months, I have felt that there was something causing him a major amount of dehydration but haven't been able to put my finger on what it was. The last time he was diagnosed with cirrhosis, he had been on diuretics (spironolactone and furosemide) but he bounced right back with supplements, etc., and his skin totally went back to normal. I believe he was on all of these same medications before... except for the pantoprazole. Or at least, if he was on it, it definitely wasn't for this long.
For a while I thought maybe the reason he looked like he was aging at such a rapid rate, is because the cirrhosis was so much worse this time around (as compared to 2 years ago when he was first diagnosed). But it just didn't seem to add up. Why is everything else getting better, while the damn dehydration is getting progressively WORSE!??
Jake says he drinks lots of water during the day. I never suspected Pantoprazole as a dehydrating factor because he is on so many other "obvious" diuretics: Furosemide and Spironolactone...so the Pantoprazole would seem like the least likely to be causing the dehydration. But now I suspect it may have been the biggest culprit of all!
By the way, Jake is taking 40 mg. of Pantoprazole per day (30 minutes before breakfast).
When I told Jake about all the potential side effects (see below), he told me that even his pharmacist had once questioned him about it, like, "Why are you still taking this?" She made it sound like it's one of those things you take a course of, but you're not necessarily supposed to continue taking it for that long. And yet, the doctors continue to keep refilling his prescriptions for it, and nobody has stepped in and said he's not supposed to continue taking this stuff. It's like they've been assuming he keeps taking it because he must need it! (a reminder to all you patients out there to SPEAK UP when you're in the doc's office, because a doctor is very unlikely to take you off medications that could actually be doing more harm than good, if you don't give enough indication that you DON'T need them!).
In my opinion, it is just plain dangerous to blindly follow your doctors orders, WITHOUT fully understanding WHY it is that you are taking every medication you are on.
In my opinion, it is just plain dangerous to blindly follow your doctors orders, WITHOUT fully understanding WHY it is that you are taking every medication you are on.
Anyway....
This is what I dug up on Pantoprazole..................and was so TICKED OFF, I was shaking.
PEOPLE WITH CIRRHOSIS ARE WARNED THAT THEY SHOULD NOT TAKE PANTOPRAZOLE.
This is a picture of what I found on the internet, which I copied/pasted/emailed to Jake:
This is a picture of what I found on the internet, which I copied/pasted/emailed to Jake:
Please note, that after further research, it became apparent that the doctors may be well aware of the fact that it is risky to take Pantoprazole. If they think someone is at a risk for a stomach ulcer or esophageal bleeding, then the risks of NOT taking could possibly outweigh the benefits. This statement I found about Pantoprazole pretty much sums it up:
All medicines have risks and benefits. Your doctor has weighed the risk of you using this medicine against the benefits he/she expects it will have for you. If you have any concerns about using this medicine, ask your doctor or pharmacist.
But the thing that ticks me off is, I feel that Jake was at a LOW RISK of developing an ulcer or esophageal bleeding. So, in my opinion, they should not have allowed him to take it for NINE MONTHS! I can understand if he was complaining of severe stomach pain, or if he refused to stop drinking, or if his esophagus looked bad. But his MELD score has gone down 20 points, he had stopped drinking almost a year ago, he has signed documentation showing he's going to regular AA meetings, I believe his blood tests have reflected that he is no longer drinking, and his bloodwork looks pretty darn good. He hasn't had too much stomach pain, and his esophagus looked great during his exam, he's gained almost all his weight back, he has lots more energy.... SO WTF?? Why are these doctors still giving this medication to him??? It seems like he shouldn't have been on it for more than a few weeks.
Here is some more info about Pantoprazole.
Protonix (pantoprazole) is a medication in the proton-pump inhibitor (PPI) class used to treat esophagitis associated with gastroesophageal reflux disease (GERD). Protonix is supplied as delayed-release granules in packets for preparation of oral suspensions or as delayed-release tablets. Common side effects of Protonix include headache, diarrhea, nausea, and abdominal pain.
Long-term treatment with Protonix may make it harder for your body to absorb vitamin B-12,resulting in a deficiency of this vitamin. In long-term rodent studies, pantoprazole was carcinogenic and caused rare types of gastrointestinal tumors. The relevance of these findings to tumor development in humans is unknown. Animal studies showed no harm during pregnancy; however there are no adequate and well-controlled studies in pregnant women, and this drug should be used during pregnancy only if clearly needed. Pantoprazole and its metabolites are excreted in the milk of rats. Based on the potential for tumorigenicity shown for pantoprazole in rodent carcinogenicity studies, a decision should be made whether to discontinue nursing or to discontinue the drug.
Pantaprazole can affect the skin, causing a rash, inflammation, hives or itchy skin. Some users experience excessively dry skin or scalp hair loss. (YEP, Jake has both of these... maybe not so much "hair loss" but his hair looks thin and dull)
Pantoprazole can affect the body in ways that may only be apparent via laboratory testing. It may cause elevated blood glucose, explains CenterWatch. Blood cholesterol and uric acid may be elevated and liver function tests may be abnormal. (Note: Jake's doctor said his blood glucose level was REALLY HIGH... like, abnormally high. I was suspicious that he was eating too much candy, because Jake does have quite a sweet tooth, but now I feel bad for not believing him when he said he wasn't eating that much candy. I'm thinking it was probably the damn pantoprazole!!!!! You'd think ONE OF the 3 clowns (eg doctors) he was seeing could have pointed out the fact that Pantoprazole could be causing the elevated blood glucose, but... NOPE.
Knowing that Pantoprazole causes abnormal liver function tests, I am really looking forward to seeing what his tests look like once he's NOT taking this crap anymore)
GOOD LORD, it almost seems as if they give this stuff in order to make patients keep coming back for more and more tests. Like, let's make them STAY SICK so they never stop giving us money to keep treating us!!!
Ironically, chronic dehydration can cause metabolic dysfunction, metabolic acidosis, accumulation of toxic waste, and buildup of oxidative stressors. Almost kind of sounds like symptoms of acid reflux, doesn't it?! It's a vicious cycle. Sadly, I would bet you just about anything that a doctor would say, "The reason he has these problems is because of the cirrhosis." Like, let's keep blaming it on the cirrhosis, and NOT the medications he's been taking!
If you are at a high risk for esophageal bleeding or a stomach ulcer, PLEASE TALK TO YOUR DOCTOR. Even if you're not, please talk to him about Pantoprazole and ask him how long you will need to take it.
Ironically, chronic dehydration can cause metabolic dysfunction, metabolic acidosis, accumulation of toxic waste, and buildup of oxidative stressors. Almost kind of sounds like symptoms of acid reflux, doesn't it?! It's a vicious cycle. Sadly, I would bet you just about anything that a doctor would say, "The reason he has these problems is because of the cirrhosis." Like, let's keep blaming it on the cirrhosis, and NOT the medications he's been taking!
If you are at a high risk for esophageal bleeding or a stomach ulcer, PLEASE TALK TO YOUR DOCTOR. Even if you're not, please talk to him about Pantoprazole and ask him how long you will need to take it.
I am NOT saying you shouldn't take Pantoprazole (because I don't know your particular story). But there is a time and a place for everything. And in my husband's case, I feel strongly that he is one of those people who should not have been on it for very long at all. Now that we live in this day and age of the internet, there is no reason we shouldn't know everything about every medication we are taking. Taking something JUST because "my doctor told me to" is no longer enough! You need to know WHY. It's YOUR life we're talking about, here.
Just as your doctor has to weigh the risks of you NOT taking Pantoprazole (and possibly dying from bleeding to death from your esophagus or stomach), VERSUS dying from tumors that could develop in your stomach...
YOU are going to have to weigh the risks of:
Doing every single thing your doctor tells you and never questioning anything he tells you to do, VERSUS taking your own health into your own hands and doing MOST OF what he says, but using critical thinking to ultimately determine what's best for YOU.
YOU are going to have to weigh the risks of:
Doing every single thing your doctor tells you and never questioning anything he tells you to do, VERSUS taking your own health into your own hands and doing MOST OF what he says, but using critical thinking to ultimately determine what's best for YOU.
Obviously, you need to quit drinking so if you are still drinking then God help you. If you don't quit drinking, I would guess you might want to keep taking Pantoprazole, because there PROBABLY REALLY IS A VERY HIGH RISK that you could bleed to death. If you are still drinking, please CLICK HERE to find out why you should stop, NOW. And then...
Please note, I am not saying that NOBODY should take Pantoprazole if they have cirrhosis... but you should at least be aware of the facts. I'm only aware because I'm kind of OCD about looking stuff up, but look, it took me almost a year to find this out!. Again, please note that your condition could get worse if you stop taking Pantoprazole, if you are at a high risk for bleeding. Only you and your doctor can decide that. I feel Jake was at a low risk, but your case could be different.
If you are someone who has cirrhosis and you have also taken Pantoprazole, please feel free to share your experience by leaving a comment on this blog post.
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Please note: I am not a doctor and I am only able to tell you what I have learned by doing my own research on the internet, and share with you the things that have worked for my husband. Please remember that Liver Cirrhosis is a very serious disease so I am not saying, do not see a doctor. Doctors have helped my
husband a lot. But I believe it is wise to do as much research as you can, and find out why
they are giving you every one of the medications and treatments they are giving you.
I believe they do not always know about or understand every treatment option that is available,
and there are many good options out there that can help.
Your health is ultimately your own responsibility, above anyone else's.
Best of luck to you!!!
If you have something to share, please feel free to leave a comment on this blog.
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