cirrhosis and PPI's

Just back from my doc and they want me on a proton pump inhibitor.  They say because of the cirrhosis I am at risk of a bleed (ulcer) from possible varicies.  I do not have symptoms of GERD (excess stomach acid) except for lots of burping.  I have tried 2 PPI's in the past (per their advice) and one made me dizzy and the other gave me diarrhea.  Since then i have been using Degylcerized Licorice and Marshmellow root tea to coat the stomach lining.  So now they want me to try prevacid 15 mg. My PCP recommended an alternative call Cytotec ( a synthetic protoglandin) which coats the stomach and prevents erosion that way. Not sure what to do.  I have started on the prevacid and will see how it goes.  What I read suggests that you should not stay on these PPI's for too long.  I just hate adding yet another drug to this regime.  Anyone else on these drugs.   The hep doc made it sound like standard proceedure for people on treatment with cirrhosis. Thanks for your feedback.  Feeling like my old self this week. On procrit, HGB up to 11.  When I get to 12 he wants to boost my riba to 1200 to get me to zero soon. If I can handle it.  14 weeks now -- 12 week VL  2700. Geno 1B.   Slow but steady responder. I am trying to focus on the responer part and of course enjoying the energy while I have it.

[sfbaygirl]

I am on a PPI as well. I don't have cirrhosis, but I know that antacids can lower absorption rate of tx meds. I have terrible GERD or something. It happens everyday especially if i don't eat. I take aciphex and tagament a few times a day and have since almost the beginning of tx. Some days I don't need it and don't take it. Recently my GI gave me Carafate to take 4x a day. I took one and felt so bad, I haven't had one since. I have no idea how these effect tx! My Hemo told me that this GERD etc can make someone so miserable that they won't finish tx, therefore it is better to take something for it. As long as you take these PPI's a few hours after the Riba the better.

ARe you going to tx for 72 weeks?

[jmjm530]

It's amazing how many of these types of symptons will go away once you get off the treatment drugs. In spite of the double PPI's daily, I was on antibioitics for around 4-5 months during treatment. At some point, you sort of give up with the cause and just treat the symptons -- actually try to do both. Don't know about "cara?" you mentioned, but find out the name and make sure it doesn't interfere with the riba absorption.

All the best,

-- Jim

[jmjm530]

Ocean: I usually take the PPI's as soon as I wake up before eating or any supplements. Just once a day. Do you think that is OK and hour or so before the riba.
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PPI's like Prevacid do not interfere with your ribavirin so you can take them any time.  Same with OTC H-2 Pumps like Pepsic AC and Zantac 100.

On the other hand, antacids like Tums, Maalox, Mylanta, Gaviscon, etc; can interfere with ribavirin absoroption if taken within 2-3 hours of the ribavrin.

I took the the PPI Nexium (2X day) for most of treatment (54 weeks) both for GERD and Laryngopharyngeal Reflux (LPR) which afffects linings higher up in the throat, vocal chords, ear canals and even the sinuses.

While all PPIs pretty much do the same thing, the side effect profile may be a little different -- so if one PPI disagrees with you, ask your doctor about switching to another. (If I remember correctly I did have some 'burping' with Aciphex and possibly Prevacid but much less with Nexium).

I finally got off PPI's about a month after TX. My GERD is 90 per cent gone, quite manageable -- eat whatever I want -- and I ony take an occasional Pepsid Complete (H-2 Pump plus Antacid) when needed. That said, some people take PPIs for life, so at this point would worry less about being on PPIs if they help you remain on treatment, etc.

I assume they did an endoscophy on you to confirm/help diagnose any possible bleeding problems? If not, something to discuss with your GI.

All the best,

-- Jim

[Cindy10]

I take prilosec first thing when I get up. I have been on for a few years now and doc says it is not a problem. He even told me to increase to twice a day if I need too, but I have not needed to.

[sallyo]

I am curious about the LPR you mentioned.  I have been ill since May with a lung infection and have been taken off off treatment since Sept. Throughout this entire ordeal I have always said and to every doctor that I feel like there is something in my throat which is very difficult to clear. Although I am getting better and have xrays and cts to show that, the constant throat clearing is still a problem
   I have heard the term LPR and wonder if I should see a thoat specialist.  Do these syptoms (symptoms) sound familiar? My docs are so focused on my lungs I feel they be overlooking the very source of the problem and that it could happen again.  This is how it all started last time.
  I was also given Acifex due to reflux that the doc saw during a bronchoscopy calling it severe.  However I have no heartburn, nausea, burping or any of those kinds of things. Thanks

[Cindy10]

Hard to say, I always clear my throat as well. However I think my it my sinusus. Have you ever had an endoscopy? That will tell you whats up with your throat, stomach and any reflux. If that is clear you might go to an ear, nose & throat doc.

[jmjm530]

LPR often doesn't present itself with symptons such as heartburn, nausea and burping; although sometimes it does.

The best doctor to diagnose and treat LPR is an ENT, not a GI. To make a long story short, LPR is a fairly recent dx with ENTs and Gastro's at odds as to both diagnosis and treatment, which is not unusually since LPR overlaps their fields of expertise and diagnosis and IMO many GI's don't want to let go of older protocols.

What an ENT will do -- and Gastro's cannot except with more evasive procedures -- is to look at your larynx with a small light probe either inserted through the nose or sometimes through the mouth. If signs of reflux are present, they can usually tell. Unlike with ordinary reflux, LPR is generally treated with a PPI TWICE a day, not once a day. That's because the tissues higher up are more sensitive than in the esophagus and therefore more acid suppression is needed to protect them.

Yes, it's possible that material is being refluxed into your lungs, or even ear canals or sinuses -- but again, you need to have a proper diagnosis; and even so, sometimes the only way to tell is to treat the symptons and see what happens. Besides your chest congestion, what makes me think you might have LPR is that "stuck in throat", difficult to clear throat, sensation. It's called a "globus" sensation and is associated with reflux/LPR. In fact, it was my very first sympton.

Hope everything works out for you.

All the best,

-- Jim

[jmjm530]

To clarify a little -- and LPR dx is still an emerging field -- reflux material most probably will not reflux all the way into the ear canal (although it may) but one theory is that the material irritates certain nerve endings in the upper throat that then refer pain higher up as to the ear canals. I had constant gastro/ear/sinus/largx problems including hoarseness, all through treatment but the good news is that most of it went away about a month after stopping the tx drugs.

[Cindy10]

Glad to hear it when away. My sinusus are very irritating, thought it might be allergies, but it started when I started tx.

[sallyo]

Thank you so much for your input. I have been considering an ENT but since I have told so many doctors about this "thing" in my throat and none of them have suggested it, I just thought maybe I was wrong.  I think to be sure I will make an appointment to see an ENT because I sure do not want this lung infection going on and on and preventing me from my main goal.  That is to get back on the Peg/riba (can't beleive I'm saying that) and rid myself of this virus.  I guess even if I find out it is not LPR and can at least rule that out and look for something else.   if it is in fact LPR, how is it treated. You mentioned more PPI but any thing else.  Other than the "globulus", the only other thing is that occasionally for no apparent reason, I seem to choke and cough when I'm not even eating anything.  Maybe that is going to my lungs?

[sfbaygirl]

I didn't realize that reflux can effect sinus. I am blowing my nose all the time these days. My problems have been awful burning in the stomach, burping, gas, nausea throughout tx. I am heartened to hear it may clear afterwards. I am now on 2 Aciphex (this is what ins will pay for) which works okay. I have noticed that in the evening I don't want to eat, because of stomach pain, but if I do I feel better. GI just gave me some Calafate? to take 4 times a day. Supposed to coat your stomach. I took one and felt horrible all over. The label says it will cause lots of sx but to keep taking it. I didn't. What's worse, the problem or the cure?

[jmjm530]

Taking two instead of one PPIs can make a world of difference -- if indeed you have LPR. The idea basically is to use the PPIs to suppress acid production and therefore allow the sensitive tissues to heal/repair. Once the tissues are back to normal, then you can hopefully start to wean off the PPIs and even introduce some problematic foods such as coffee, tomatoe sauce, chocolate, etc. -- I'm assuming you tried to eliminate some reflux triggers from your diet or other non-drug measures such as elevating the head of your bed (not by pillows) and not eating within 2-3 hours of sleeping or lying down (yeah, that last one was a real joke when I was on treatment) :)

[OceanLiver]

I usually take the PPI's as soon as I wake up before eating or any supplements.  Just once a day.  Do you think that is OK and hour or so before the riba.These PPI's are not  catagorized as antacids (tums etc.) so i wonder if they intefer with the absorbsion of the riba, too.. The doc didn't mention that.  It sounds like you have severe sympoms and need to take them more frequently.  Are you still trying new ones to find one that works without more sx?  There are so many out there.  have you heard of the cytotec (misoprostol)?  That one you take about 4 times a day.  Don't know if I could keep that together.  My doc from CPMC (SF) says his protocol is to continue treatment for 9 months after clearing.  I figure I will discuss the 72 weeks  with him later on.  See how it goes after i clear.  How long will you be treating?   Hope you feel better for the holidays.  I will be traveling to the bay area to see my daughter and grandchildren.  Hope the roads stay open.  We are freezing up here now.  Stay warm and comfortable. Later....

[sfbaygirl]

I have a consult tomorrow with Dr. F. in SF. With all the info he has on me I am sure I will be standing in the corner for awhile once I get there. LOL I am in the Walnut creek area, so it's not far from here, I dont' want to deal with morning traffic. Great crispy day today. If we leave before dark. LOL Who did you see there? Do you live North? Those Calafate pills look like horse pills to me, not chewable at all! I'll have to look them up before I try them. My GI is not hep savy and wouldn't know that aluminum is not good to take with the Riba.

[GoofyDad]

I have early cirrhosis. My CPMC doc put me on acifex as soon as I started getting some nausea from the riba, then allowed me to stop once that abated (about a month into tx and a month in duration). Stopping the PPC may have coincided with my first upper endo, which was totally clear, but I don't think so. My advice would be to look into the endo if you haven't had one.

[sfbaygirl]

Pushing those scopes now huh? Now that you're good to go for awhile! LOL My problems subside for awhile and I stop the PPI's, then a few days later IT"S BACK!

Going to the city today, figured it was easier seeing our doc in the morning not traveling so far in traffic. Besides I can walk across the street to Neiman's from the hotel. No Ross's that I know of in Union Square... Haven't been shopping yet. Online shopping rocks!

How long do you think the dr. will keep me tomorrow. I am a bit scared he's gonna lock me away looking at all these reports I've had to send him. I'm almost afraid to take John in with me, cuz' even when I leave there he may take over the lectures....Maybe I should leave him in the waiting room?

[jmjm530]

The endo would appear to be a must, however, the endo can miss reflux in the very upper tract such as the larynx area that is affected by LPR. That's where the ENT with his lighted mini-probe comes in. When I asked my gastro after the endo if he saw any reflux up in the larynx region, he slightly-embarrased said he didn't recollect looking. This is not uncommon since they are usually concerned with the esophagus on down.

All the best,

-- Jim

[GoofyDad]

Unless too much material refluxed to my brain, it loooks like Ocean is on the PPI to mitigate the potential for a bleed stemming from the cirrhosis. The endo would would hopefully eliminate that worry and, again hopefully, provide some peace of mind. Doesn't sound like Ocean would need to be on a PPI for GERD since he reports no symptoms.

Ocean, as SFbay points out, my experience says if you sweet talk the doc you may be treated to him running his roto-rooter pipe through the rear entrance too.... Good Luck!

[GoofyDad]

A hotel? Holy Mackerolli!

Trust me. No one's going to rag on you. Get there early and you might get more time for chit-chat. Beware the Hill!

[jmjm530]

Not verbatim, but pretty much as written, regarding my reflux and LPR:

ENT 1 to ME: You have LPR reflux. No doubt about it.

ME TO GASTRO 1: My ENT says I have LPR reflux.
GASTRO TO ME: ENT's blame everything on LPR reflux. Let's do an endo, "swallowing" series, etc.
GASTRO TO ME: Your tests are inconclusive for reflux but you should probably take a PPI.
ME TO GASTRO: Did you look above the esophagus when you scoped me.
GASTRO: Not sure if I did.

ENT2: You have LPR reflux. No doubt about it. Take two PPI's a day.
ME to ENT2: My gastro says the tests are inconclusive.
ENT2 to ME: I lecture GI's all the time on LPR. They just don't understand what it is.

------------------------

The problem is that modern medicine has drawn a line somewhere below the larynx and above the esophagus that says "stop" and "go" to Gastro's and ENT's respectively. Unfortunatly, the body doesn't know this line exits and we the patients pay the price.

-- Jim

[sfbaygirl]

So all those gallons of ice cream and hiding from my hemo won't be talked about?  

What hill? If there is a hill I have to walk up, the only way I'm getting up it is with one of those probes! That ought to do it.

We like to spend a few nights in the city at Christmas time. The lights, the stores etc. Hotels (good ones) are pretty reasonable this time of year too. John is wondering if I will make it out of the hotel even. This is why I picked one 20 ft from Macys. LOL

[sallyo]

JmJm:  I just googled LPR and I am so excited that this might be the root of my problem.  I even looked up the numbers of two ENT 's in my area so I can make an appointment.  I have none of the classic symptoms or GERD.  Just this lump and choking sensation.  When I was in the hospital, they sent specimens for micro to local labs and to mayo in AZ.  Nothing identified but the mayo pathology mentioned "fungal in nature" and possibility of aspiration.  The fungal aspect is being treated but maybe gastric content is getting in to my lungs with the choking sensation and causing the infection to grow or at least resist the treatment.  Also the shortness of breath would make sense.  I think you may have diagnosed me.  I will let you know.  I plan to get the earliest appointment.

   Cindy;  Yes I have had the endosopy and a bronchoscopy. The endo did not show any reflux but that was pre transplant when varacies was a concern (2000) When I became ill this Oct, it was the bronchoscopy that the pulmonary doc saw reflux.  Of course like JMjm said he probably wasn't looking above the layrnx. He sent me to the GI who said it wasn't reflux causing my sob. Put me on 30 Preacid (?) and sent me to a cardiologist.

[OceanLiver]

Goffydad, yes you are correct about them trying to mitigate the potential for a bleed. But you are wrong about me being a he.   Yes, I had a endo and colonoscopy last Jan. before treatment.   It showed no varicies (contrary to one CT report) and no GERD.  There was a very small erosison in my stomach the  surgen said was gastritis.   put me on prolosec to heal it  - 2weeks =too dizzy.   then I used Karafate liquid to coat stomach for a few months (eaiser on the liver before biopsy).  Stopped that - doc said too much aluminum wanted me on PPI -Aciphex 20 mg. Waited  a few months to take  till I started treatment.  That brought on diarrhea . Took 2  months off.  But burping started to get worse. So now I am trying the prevacid 15 mg.  It is reassuring to hear that you can stay on these for a while if needed.  I always wonder when what the docs tell me contradicts with what I read.   Also  intereesting that different docs in the same  CPMC group have different approches.  My doc says anyone with cirrhosis should be on a PPI continually, but it seems that your doc is more flexible according to symptoms.    Also I think the DGL and marshmellow root tea help to coat the stomach and decrease problems.  Diet issues are of course an ongoing struggle.  I have finally settled on an organic Earl Grey decaf tea in the AM.  Seems like a much gentler way to start the day.  But limiting tomatoes during tomato harverst was even harder than giving up caffine.  What is life without homegrown tomatoes?  Goodluck with those hills, shops and docs, sfgirl.

[sfbaygirl]

Now I need one of those probes to get John outta the house!! I'm packed and dressed, he is running around naked with rage without the riba. Oh well, at least we are starting early for my appt. tomorrow.

You mentioned Karafate, I think that is what my Gi (the moron, not CPMC) gave me, but it is spelled Carafate. Does it have aluminum in it? I haven't checked it out yet. But one pill did me in....

[OceanLiver]

yeah, spelling is not my long suit -it probably is carafate but I took the liguid.  Did you get the chewable pills?  I think that is what they prescribed for me- not the pill you swallow.  but they did not have the chewable pills here in the sticks so I opted for the liquid.  i had no adverse side effects with the liquid.  make sure you are getting the proper form.  yeah I did not research the alluminum part - just what the doc said.  Are you seeing someone at CPMC too?  Safe travels, at least the sun is shinning.

[sfbaygirl]

Most of the time this pain wakes me up at 3 am and I'm doubled over. I take some tagamet and sit up in bed. Sitting up helps A LOT! I know what you mean about not laying down on tx, not possible! But just getting your head much higher than your stomach works well until it calms down.

[OceanLiver]

It is recommended to not take Carafate with antacids as they have aluminum in them to - just may add up to too much aluminum. Is it the aluminum in the antacids   what reacts badly with the riba?  As much as I know - aluminum is not good for any humans. So we really want to limit our consumption as much as possible.  Throw out your aluminum pots and pans.  Replace with stainless steel.  I am replacing my old cast iron pans now (boo-hoo). Fear of too much iron.  Am I going over board?Yes I live up north and see Dr. W from CPMC when he makes his rounds here.  Mostly I see his PA.  I had my biopsy down down there by Dr. B at CPMC. Hope your visit goes well and you get some relief from your digestive discomfort.  That would be the ultimate holiday gift.  Is it inappropriate to mention doctor's names on this site?

[OceanLiver]

My PCP recommended an alternative call Cytotec ( a synthetic prostoglandin) which crreats mucus and coats the stomach and prevents erosion that way.  Ask you doc about that one as an alternative to the carafate.