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: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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Guest Sadie

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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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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