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A few questions on PPIs (Nexium, etc..) for LPR GERD (reflux)


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#1 cometbro

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Posted 12 April 2011 - 10:59 PM

Hey guys, I've been having an occasional symptom that my throat felt like not enough air was getting through and an occasional hoarse throat.  My onc suggested to go to an ENT and the ENT said it's a little red in there and based on my symptoms, it could be LPR (Laryngopharyngeal Reflux), which is a type of GERD (Gastroesophageal Reflux Disease).  To put it simply, it's "the backflow of stomach contents up the esophagus and into the throat".  He prescribed Nexium for me and told me to go on it for a month or two to see if my symptoms improve.

Apparently my insurance doesn't cover Nexium and my insurance company said that I must try an over-the-counter medication, Lanoprazole (Prevacid).  If that doesn't work for me, then my doctor could go about letting the insurance company know that it is not working and hope that they pay for the Nexium.

I read the discussion that Trey started on acid reflux meds interfering with TKI drugs ( http://community.lls...age/92246#92246 ).  I am currently taking Tasigna and from what Trey said, that would be the best TKI to take if you need to take one of these PPI medications like Nexium.  My questions are:

- Any significant differences between Nexium and other prescribed PPI drugs in comparison to the over-the-counter PPIs ? Would one affect my Tasigna uptake more than another one?

- What is the suggested best time to take the PPI drug?  How far apart should it be taken from the TKI drug?

- If it is Tasigna causing this reflux, and I have to take Tasigna for life, can I conclude that I have to take these PPI drugs for life?

- If taking these PPI's, can I then eat some of the non-recommended foods?  I doubt i'm gonna cut down on ice cream, and I love spicy foods

Thanks guys, any input appreciated.



#2 Trey

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Posted 13 April 2011 - 08:50 AM

The TKI drugs can cause swelling in certain areas, and I have found that they cause swelling in my throat tissues that restricts my throat a bit, so that swallowing feels a bit restricted.  I don't know if that is your issue, but just wanted to point that out as a possibility.



#3 cometbro

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Posted 13 April 2011 - 09:27 PM

I was really thinking that was the case before.  I thought I might be having some sort of allergic reaction to Tasigna and that my throat would close up a little bit, but it is something that rarely happens and doesn't last for more than a few seconds.  Its like when i'm inhaling, my windpipe/throat feels a little more closed up than usual but it goes away fairly quickly.  The last week and a half is what started to convince me it was more of some sort of reflux because I would randomly hiccup more deeper than usual and feel like my stomach was convulsing more than usual when hiccuping.  Also, I could feel some more acidicness in my throat and sometimes I would wake up in the middle of the night with a slightly acidic sensation around my throat and chest.  This acidicness i've been feeling is more this last week and a half.  The occasional breathing was randomly maybe once or twice a week since I started taking Tasigna in October.  I have no problems eating/swallowing and don't feel any restriction with that.

It could be a combination of both though.  I would think the ENT would notice if my throat is a little swollen, although, he did mention that as an ENT, they don't go too far down and a different specialist might be in order if it turns out it is deeper than he can see.  He did mention that it was a little more red than it should be back there and wanted me to try the Nexium/Prevacid to see if my symptoms improve and then go from there.  I have yet to buy the OTC Prevacid but will probably go to CVS tomorrow to give it a shot since I emailed my Onc and he said that some people have had these type of symptoms and to give it a shot.

Thanks again for the responses.  I'm really just afraid of having to take yet another medication for the rest of my life.



#4 Susan61

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Posted 13 April 2011 - 10:48 PM

Hi:  We have discussions regarding these drugs, and what you can or cannot take.  I was prescribed Nexium when I first started my Gleevec due to terrible GERD back in 2000. I have been taking it everyday for the past 10 years, and it works for me.  It also did not interfere with my Gleevec, but with some people it did.  My issue now is that I can get Prilosec for $20.00 for a 90 day supply through my insurance rather than the $80.00 for a 90 day supply that I have been paying.  My concern is will the Prilosec work as good.  I also have that throat problem once in awhile like you described.  You have to find what works for you and your other medications.  Terrible allergies is another issue with me that effects my throat.

I am glad I went to the ENT doctor to be examined when my GERD started, because he told me what could happen with the Esophagus if not treated with something. I was already getting some redness and deterioration showing up, and then when I got my Endoscopy a few months after starting the Nexium it had all healed up.

It can get rough at times, trying to figure out the best course to take. I know if the other drugs do not work, then the insurance will pay for what is prescribed in most cases.

I would like to know if anyone is using Prilosec.



#5 cometbro

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Posted 13 April 2011 - 11:29 PM

Hey Susan and Billie, its hard for me to imagine you guys taking these anti-acid medications for so long.  Is there no way you guys can take them for some temporary time and then get off the medications and see if the situation corrects itself?



#6 donkatking

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Posted 17 April 2011 - 05:44 AM

My question is-What foods should I avoid?  Before CML I ate what I wanted and had no problems with acid reflex.  Now seems to be a different story.  Last night I had pizza and had tightness in the chest.  I have had a terrible cough for some time now and was direceted to see my PCP who advised me to try ZYRTEC and a nose spray called AZELASTINE as we think it might be allergies.  Well I took both together and got lightheaded and was droggy at work the next day so I immediately stopped taking them.  Started the nose spray again over this weekend and still that damned cough.  We went out last night and had pizza and I again took the nose spray and my chest felt really bad and that cough.  I could not sleep so I went and got a Prilosec which seems to have helped with the chest tightness but did nothing for the cough.  Got some sleep.  Seems as if when I lay down and while sleeping the cough subsides.  I suck on cough dops which helps.  I do have my next appt with the ONC on wednesday.  The cough has been going on since before I was diagnosed with CML.  Ohhh sometimes can't win for losing.  With the Prilosec I had the 14 day over the counter and stopped after my first 14 days treatment and had no problems to now so will start it again.  FUN!!    The ONC had no problem with me taking the prilosec and said it would only have a slight affect on the Tasigna.  This will be another question I will hit him again with.  Funny thing is 4 months ago I took no medications at all--not even something for a headache.  CML comes along and I'm taking this and that.  How my life has changed.  Oh and one more thing I had a upper GI and followup with a Gastrointerologist.  He prescribed for me called SUCRALFATE which you crush and mix with warm water and it suppost to coat the esphogaspht (mispelled).  I can't figure ou how this works asyou musttake it on an empty stomach 2-3 hours after a meal on an empty stomachand 1 hour before or after antiacids .  Haven't used it as I cannot figure out how to use this drug with Tasigna.  I can't eat for 6 hours now and try this and I wouldn't be able to eat half the day.  Doubt you'd wanna take this with the Tasigna but it's suppost to help.  I have the prescription filled and it is another question for the ONC. My persistant problems with not being able to sleep have been better as again I got a short term perscription for Lorazapam.  If take one pill a few hours before I go to sleep it helps.  I know this is very addictive so short term is for sure.  Suppost to talk to ONC about getting a sleeping pill that won't interact with the Tasigna.

In all I just want to live normally but I guess as a newbie that will take alot of work and some imagination.  I don't like to go to see doctors and definitely hate hospitals but over the past three months have seen more than in the first 56 years Ihave been around.  I have so much to learn and the learning curve is pretty hard.   Maybe it's the Mad-Cow I feel is in me from the 20 years and 1 day of charm school I attanded (US Army).  Don't know.  Well keep the information out here and I'll try hard to absorbe as much as I can understand.  Thanks everyone!!  



#7 cometbro

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Posted 17 April 2011 - 10:45 AM

I understand exactly what you mean donkatking.  From not taking any medication, to then finding out you have CML and then having to take multiple medications.

It's like an endless loop of medications.  You take a medication for the side effects of another, but then you have to take another medication to cover for the side effects of that other medication.

As far as what not to eat, that's a tough one for me.  Most of the foods they tell you not to eat are foods that I would normally eat everyday.  I guess unless it gets really bad, I don't see myself stopping any of the foods I like.



#8 Tenderheart

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Posted 05 June 2011 - 07:38 AM

I've been on GERD meds for several years. Many insurance companies have stopped covering Nexium on their formulary, so many of us have had to try different PPI's. Prevacid over the counter is a much reduced dose from when it was a prescription drug-besides being less effective for most people.  I have struggled with nausea the entire time I've been on Gleevec, over 7 years now, but the last few months I have had a real problem. One thing I did was ask my PCP for a better GERD med, hoping then the nausea would be easier to control. The new med he recently started for GERD is Dexilant, from Takeda Pharmaceuticals. It is also expensive, but there is currently a discount progam with the company. My doctor provided me with the card, which I activated. It makes the drug only $10 a month until the end of the year. It at least gives us a chance to see if it works better. You might try this for a while, anyway.



#9 cometbro

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Posted 05 June 2011 - 08:04 AM

I'm starting to think I have a real problem with this reflux.  I've been on Omeprazole (Prilosec) for a month and a half now (40mg 2x daily) and if I eat anything remotely spicy or something a little bit "too" late I wont be able to sleep right for LIKE 3 OR 4 DAYS!.  Of course it only bothers me in the night when I am lying down.  Sometimes something wants to come back up my throat or I feel like I can't breathe and choking.  I've tried raising the head of the bed about six inches and also sleeping on my left side but in the end, if I make any small mistake in what I eat, it'll be 4 days of no sleep.

I have an appointment with the ENT tomorrow and he is probably going to send me to another specialist to look deep down in my stomach to see if they can find something.  My ENT hasn't even suggested change of medications, I think he's assuming that if Omeprazole doesn't work, then something else is wrong.  I hope the new Dexilant medication works for you.  I would think all these medications would do the same thing but apparently some work better than others, even with the same dosage. On top of the Omeprazole, i've been taking one Ranitidine (Zantac) 150mg right before going to bed the last 2 weeks and it still doesn't matter if I make 1 small eating mistake.

I always eaten really spicy foods, and foods that "can cause" reflux my whole life and never had issues until taking the TKIs.  I wonder if one TKI is better at reflux issues than another because at this point, although i'm doing well with the Tasigna, I will consider switching.



#10 Tenderheart

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Posted 05 June 2011 - 08:08 AM

Best of luck to you! Keep us posted!



#11 Susan61

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Posted 05 June 2011 - 09:59 PM

Hi:  I truly understand your frustration with all of this.  I am still on my Nexium and doing very well.  I just asked my doctor about switching to one of the cheaper drugs, but she told me Nexium will work the best.  I just had to refill mine, and its costing me $80.00 for 90 pills.

You also mentioned going to a ENT doctor. You need a Gastroenterologist to do a Endoscopy on  you to see whats going on.  Have you had a EGD at all to look down into your esophagus.  I know these posts go way back on this subject.  Hope I am not repeating myself here.

     I hope you find some answers soon.



#12 cometbro

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Posted 05 June 2011 - 10:21 PM

Hey Susan, I believe the only thing i've had done is a nasal endoscopy.  I haven't had an EGD.  And you are right, I need to see a Gastroenterologist.  I remember that the insurance didn't approve the Nexium.  Can't my doctor fight to get the Nexium if the Omeprazole isn't working?  It seems that people do better on the Nexium than then other PPIs.  Thanks for the response.






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