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michele chere

Severe Reflux

35 posts in this topic

:o Hello to all, I haven't been on here for quite some time. But now I'm back on the computer and needing help. I am suffering terribly with this whole reflux/GERD thing. I have to sleep sitting straight up, avoid eating after 2 in the afternoon, take Prevacid twice a day, otc antacid tablets at nite. And I still wake up feeling like battery acid has just been poured into my throat, lungs, and even my sinuses. I don't know what else to do. Can anyone give me any suggestions? I had a bad episode early this morning and I guess I must have aspirated too much stomach acid as has been hard to breath all morning. Thanks for any suggestions. It's great to see familiar names and faces again!

Michele Chere

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Michele, I can't offer a lot of help but for me Nexium seems to work better than Prevacid. Maybe someone else will have some ideas. Good luck, Birdman


Hugs for All,

 

Julie (Bird Lady)

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Michele, you might need to attack the GERD harder. I use the Nexium and Reglan. The Reglan seems to keep things in control. I hope you can get a change in Medicatons that really helps you. Good Luck


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Michelle, Yes, the reflux can be pretty nasty at times. Sheryl is right, talk to your doctors.

Like you, I sleep upward too. That is helpful.

 

Sadie

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I sleep at an incline and have also altered what I eat. I have eliminated a lot of the veggies that cause me to have reflux issues (broc, cauli, brussel sprouts, cabbage, tomatoes and tomato products) as well as caffeinated drinks. That has helped me tremendously as well as an increase in my reflux med. I love all the foods I named so that has been a bummer, but I feel better.


I may have Scleroderma, but Scleroderma doesn't have me!

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Thank all of you for your input. I used to take Nexium, but my insurance will no longer pay for it. I had a severe allergic reaction to the Reglan, so I'm still hoping someone will come up with something great soon. Thanks again for responding.I'm glad to be back with the message board...we can all use the great support.Have a great evening. Michele Chere

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Michele,

 

I also have severe acid reflux with DeMeester score of 82 compared to 14 for people without acid reflux. I take Aciphex and considering surgical option to strengthen the LES valve.

I also had severe reaction from Reglan and stopped taking it.

 

Please make sure to go through regular PFT tests to ensure minimum damage to your lungs. Even if, medications can control acid reflux, they can’t control damage to lungs from fluid back flowing from lungs.

 

Take care!


Kind regards,

 

Kamlesh

 

 

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Michele,

 

My insurance stopped paying for Nexium also. Unfortunately, for me Nexium has worked better than the other meds I have been on. When my insurance stopped paying, I tried Protonix, which is covered. While not as effective as the Nexium, for me, it still does the job. You might want to talk to your dr. about it. I also take Sucralfate, in liquid form, before bed. The pill was way too huge for me to swallow. You might talk to your doctor about it, as well. Good luck.

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Michele,
Of all the things that can go wrong with us, I think reflux is the nastiest and most demanding of serious lifestyle changes. Like everyone else, my insurance doesn't cover Nexium, so I take two Prevacid a day and antiacid chews and liquid coatings as needed. I keep the bottle of Mylanta and antiacids next to the bed at night and when I start coughing, I know the reflux has started so I drink a little Mylanta or a bite of the antiacid.

We do have a section on reflux prevention and diet that you might want to take a look at. For me the dietary changes have helped the most along with sleeping inclined and ONLY on my left side. Of course eating within 3 hours of going to bed is also a huge no-no.

I hope you find some ideas from the above links that will help you. I certainly prefer making changes to diet rather than taking more pills. We take enough already.

Let us know how you are doing and if you find that magical solution to your reflux.

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I have severe GI troubles and when I have an attack that hits during the middle of the night the doctor has prescribed what he calls a GI Cocktail where I mix an antacid with lanacane and drink it and it numbs my esophagus and throat. When these attacks hit I feel like I'm being burned from the inside out. It feels like acid and it hurts so bad it's unbearable. I take Aciphex 2 times a day and I also take a liquid suculfurate at night. I also have my head of bed raised and when I have an attack then I am forced to sleep in the recliner. I have found out even the simplest slip up of having orange juice, red sauce, anything spicy, chocolate or caffeine or carbonated beverages will cause an attack. I don't know what I'd do without the upper GI cocktail. Without it I kept having to go the ER and that's what they would give me so having the ability to mix it up as soon as it hits has been a life saver.

 

I hope this helps.

 

Warm hugs,

 

Peggy

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Several of you guys mentioned that your insurance won't pay for nexium. I applied on line for a free Nexium Purple Plus Savings card. I didn't really know what the card would do but I just picked up a months supply of Nexium and it was only $5.00. Hope this helps.

Birdman


Hugs for All,

 

Julie (Bird Lady)

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Peggy, your antacid cocktail sounds exactly like what I need. Could you tell me exactly what you use and how much of each you mix together? I will ask my doctor for the rx for lanacaine, if it's a prescription.Nothing I've tried can eliminate the severe burning.I'm anxious to try your solution. Thanks!

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Sucralfate is new to me...what is it? An antacid? Is it over the counter? Thanks!

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Thanks for the info on the Nexium savings card...I'll check into it!

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I'm sorry it's called Carafate and it comes in a liquid form. I take 1 - 2 teaspoons before bed and it seems to coat my esophagus and stops the acid from coming up.

 

The GI Cocktail that I take is a prescription for Lidocaine that I mix 2-3 teaspoons with Maalox in a little bottle the pharmacist gave me and I shake it and then drink it. What this does is numbs my esophagus and throat and stops the acid from coming up. It also calms down the intense burning where I feel like I'm being burned from the inside all the way up to my throat.

 

I hope this helps anyone who also suffers with this.

 

Warm hugs,

 

Peggy

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My insurance covers Nexium but it has to be approved by my Dr. and I always have a problem with the first prescription. Nexium is expensive, even with insurance.. Maybe some of you can look into it further and see if there is any way your insurance will cover it like mine does.

 

Michele, I hope you get something to work for you. Take care of it because we don't want your lungs to get involved.

 

xo,

Tangelo

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Michele,

I have found that Gaviscon, an over the counter antacid, can be pretty helpful (- though that cocktail with lidocaine sounds fabulous and I certainly plan on talking to my rheumatologist about it -) for those times between prescription meds when I have breakthrough reflux. They have strawberry flavored tablets made specifically for reflux that seem to cut the raging fire down a bit. I have reflux always and I take 2 nexium, 2 levsin, and 2 procardia a day to keep the reflux and esophageal spasms and nausea away. They are the best of the OTC tablets and are handy when I am working and out in public or before bed and in the middle of the night. I sleep on the "wedge of cheese" pillow and it also helps a bit too. Dialing in what foods get you is also helpful, but if you are like me that can change and sometimes even water can do it if your body is in the mood to get you.

 

If you cannot get hold of the Lidocaine drink or you need a quick accessible fix give the Gaviscon a try if you can find them, they are not too bad tasting and they do mitigate some of the fire. Let me know if they helped you at all.

 

Good luck and I hope you feel better!


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Smurfette,

Thanks for the scoop on the Gaviscon...My primary care dr recommended it, too. I just bought some today and will try it. I saw my gastro dr on Thurs and he said I can't have the GI cocktail except at the ER. He also said there's nothing else he can do for me because of the damage the sclero has caused. He told me I will have to get used to sleeping sitting up in a chair at night.I've been sleeping sitting up in a chair for the last 2 months and I still can't get used to it!Anyway thanks for your input and I'll put the Gaviscon to the test to see if it will help stop that awful acid reflux burn.

Sending happy thoughts

Michele Chere

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Michele:

 

Shame insurance won't cover Nexium :( . My didn't as first, but I found great relief in Pepsid AC. Actually worked for a good two years before downing out. Finally insurance began covering the Nexium at that point and one pill a day and I'm good to go.

 

Try the Pepcid and see if that works. When the hives were at their worst, I was given Pepcid because it has some type of antihistamine properties but it certainly didn't stop the reflux at that point. I was told I could take Tums with the Pepcid and it did do the trick short term till I could get back on the Nexium.


Tru

 

It is what it is...........

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Michele:

 

Just remember that if you have to take the chewables and such, keep an eye out for cavities. My teeth went completely downhill before the Nexium and the dentist suspected it was from chewing all the Tums and such throughout the day.


Tru

 

It is what it is...........

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Hi everyone,

I take Omeprazole, which is the generic form of Prilosec. You may already know that Prilosec is about the same thing as Nexium. I can't remember exactly what I paid for the Omeprazole, but I just looked online for a price and found it for $25.95 for 150 pills -- or about 5 cents per pill.

This works great for me and my reflux problem was so bad for awhile that I couldn't make it through a meal without having to go bring up food because it was stuck in my throat. I didn't even associate this with the reflux, but later a doctor put me on Prilosec, although I really didn't think I needed it. I felt that my acid was under good control because the chewable antacids worked well for me.

What I wasn't considering, and what you guys may also not be considrting is that if you are taking an antacid chewable or liquid it means you are having acid right then. Right? And that acid is burning your esophagus. Then you neutrealize the acid with the chewable, but you have already had damage from the acid. the acid burns scar your esophagus, thus creating swallowing problems. I was amazed when I suddenly found that I could swallow again after being on the Prilosec a short time.

Prilosec and Nexium, and some others I believe, are Proton Pump Inhibitors and they actually slow your acid production WAY DOWN. So, you just don't have nearly as much acid forming -- almost none.

I'm not a doctor, but I would certainly urge anyone with severe GERD to get all the information you can about the Proton Pump Inhibitors. I think you need to slow that acid production way down.

Also, don't insurance companies sometimes change their minds about paying if the doctor tells them that nothing else is woreking and that this particular patient has to have a certain drug and not a substitute? I think they sometimes actually require a trial of one or two other drugs first, but I thought they'd often begin to pay if nothing else was worrking.

Also, Michele Chere, why won't your doctor let you have the cocktail except in the emergency room? If Peggy's doctor prescribes it for her, why can't your doctor do the same. There may actually be a reason, but I'd bet it's just a bias on your doctor's part. Some doctors are so reluctant to give strong stuff that actually works.

If this one won't help you, I'd get another opinion and I'd seriously consider seeing a pain management specialist. Also, would you be more comfortable if you put blocks under the head of your bed. I've heard several people say they have propped up their beds to avoid acid problems. Pillows don't work the same way -- it has to be the whole head of the bed.

 

Good luck and don't give up!

 

 

Mary in Texas

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This is a good discussion with lots of advice.

 

I tried most of what you have done, and LUCKILY it is working for me. That is - Prevacid twice a day, no eating after 6:00pm, lifts to elevate the head of my bed...

 

Eating small meals and staying "regular" has been essential. Even the slightest constipation has a huge impact. I recently doubled my iron supplement and have had to be sure to maintain my fruit, vegetable and morning oatmeal consumption.

 

The last time I had a bad spell, I put myself on a gluten-free diet for a month and that really seemed to help get things under control again.

 

Keep at it - I hope you find the right combination soon!

 

-RTS

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Mary:

 

I think you're right about the insurance company covering a drug upon a form filled out by the doctor.


Tru

 

It is what it is...........

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Ho bookworm,

 

I take Prylosec and pay about $25 for 6 weeks of tablets. You say Omeprazole is the same thing and you found it for 5 cents per pill. Would you mind sending me a pm and tell me where you found it? I really could use that saved money in my pocket lol

 

Thanks

Karen

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