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smurfette

Any new ideas for severe reflux and chest pain?

16 posts in this topic

Ok so I take the standard stuff and even some not so standard stuff- the nexium, levsin, procardia and anti nausea meds. I have had botox injected into the sphincter between the stomach and small intestine and still I have reflux and chest pain ad the gastro paresis did not seem to either go away or make much of a difference.

 

No one here is a doctor and no one is expected to diagnose any new problem, but is anyone doing anything else for severe reflux beside taking meds and eating small meals? Am I not doing something behaviorally that I should try? Is there a med that you suggest I ask my doctor about. I did ask him about Acifex and I have had no success with Prilosec and its other brothers.

Am I missing something? Is there something that I am not seeing? Your ideas and advice would be very appreciated.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Smurfette...

 

First of all, no chocolate, LOL. Are you sleeping with your bed elevated? I have mine raised about 7 inches and was able to cut my Nexium dose in half. I know, GERD is just nasty, isn't it?

 

I hope you get some relief soon sweets.

 

Clem

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Smurfette,

I am so sorry the botox did not work for you. My heart is just crushed. You took a good shot at it though and I commend you for that. You are and will be a heroine in my book always.

Your symptoms do sound alot like mine. The last appointment with my GI doctor went like this. We talked about the good and the bad. We talked about the mortality and morbidity with Barrett's should it become cancerous. We talked about the circulatory problem and the mortality and morbidity should a clot form and become lodged in my heart, lung or brain. Then I asked him to please try me on Reglan for the gastoparesis and keep the Aciphex 20mg twice a day, keep the Carafate at 2 teaspoons 4 times a day, the Reglan is 5mg 1/2 hour before meals and at bedtime. The clotting problem you don't have(yippee!!). He helped with that one and suggested Plavix which my rheumatologist started. So far so good!! The reflux is much better, the pain and chronic inflamatory feeling is gone with the Aciphex and Carafate. It has been difficult coordinating all the meds and to take them at the right times and I really try not to forget to take them.huh.gif It is not easy and you are not doing anything wrong; it is what it is, scleroderma.

Have been doing alot of research and Carafate is very popular along with a proton pump inhibitors like Prilosec with some of the sclero experts. Reglan and the like is popular with them too if needed. Can't remember where I found the information though.tongue.gif The Protonix I had been taking, somewhere, stopped working for me, I think, dry.gif so I asked for a change and the GI doctor ordered Aciphex. I think I was reading  about some rheumatogists now are treating GI symptoms because some GI doctors are not aggressive enough.

Smurfette you are in my thoughts and wish you healing always.

Judy


A happy heart is good medicine.

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Hi Smurfette,

 

I'm sorry to hear that your botox treatment didn't work. Some of us find improvement by exploring the topic of food sensitivities. For example, gluten sensitivity is a known cause of scleroderma and dozens of other autoimmune diseases.

 

Since discovering and dealing with my food sensitivities, my reflux has greatly diminished. I had always told my doctors that anything with flour (and especially, donuts) were a major cause of reflux for me, but I could eat a Mexican dinner (for example) and be fairly fine -- and they always laughed about it, and denied that "mild" foods like donuts or breads be a trigger. Well, not so funny and not so impossible, when it comes to food sensitivities.

 

That's not to say food sensitivities are involved in all cases of heartburn. There are other factors involved when it comes to scleroderma. What it means, though, is that those with scleroderma esophageal involvement AND food sensitivities are going to have worse suffering...which can be partially or largely alleviated by dealing with their food sensitivty issues.

 

And, of course, bear in mind, I'm not a doctor, I have no medical training at all, if the shoe doesn't fit, throw it in the dumpster...and so forth.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi smurfette,

 

sorry you feel horrible, I know that pain too. When was your last endoscopy or barium swallow? You may have a large hiatal hernia? If all the usual stuff isn't working I'd want it checked. Also, make sure you are taking your meds correctly. You are supposed to take things like prilosec a half hour BEFORE a meal. Stop eating at least 3 hours before bed. Eat VERY SMALL meals. Alcohol is BAD. Extra strength antacid tablets or liquid can be used for 'breakthrough' acid. That's my advice...good luck

Karen

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I, too, was having chest/esophageal pain and I asked my GI if it could be related to reflux. He said I'm on about the most potent reflux regiment there is (medication + environmental changes + diet restrictions) but asked me more about the pain. I told him it burrows through to my back and I feel it through my upper chest - much like we hear about heart attack pain but not with the left arm pain. I charted it for a couple of weeks (what I had eaten, when I had eaten, what I was doing, how intense the pain was - you know that 1-10 pain scale they have -, and how long it lasted). After he looked at that, he said it was esophageal spasms. He gave me a prescription for Nitroglycerin (sublingual) to use whenever it starts, and my Internist also suggested adding Imdur (generic is Isosorb) in an effort to reduce the frequency of the spasms and it has worked like a charm. So, if the pain gets worse, you may want to ask your doctor about esophageal spasms.

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Hello Smurfette

 

It's nice to hear from you again although I am sorry it's because the botox didn't work out. It must have been a disappointing post to have to write.

 

I can't offer any help I just hope you get some relief soon. Although I don't have your issues I can relate to being sick and tired of being sick and tired.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Yes, esophageal spasms. I need to do some research on that too. I have similar pains as you Soaring Eagle. Have any of your doctors mentioned that Smurf?

 

You know what else? I find that sometimes my meds will cause the burn within 15 - 20 minutes of taking them. I am guessing some get stuck. Take your meds with lots of water. I have also been experimenting with the time of day I take them and with/without food etc...

 

Have your doctors ruled out a hernia?

 

I hope you find relief soon. In the meantime, if you wear your shoes too tight, maybe it will take your mind off of your burning esophagus. Sorry. Lame attempt at humor. I know it would probably take walking on hot coals to take your mind off the burn in your throat. :(

 

Hang in there,


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Thank you all for your responses. I do have very strong esoph. spasms and that is a very big part of the problem. I am medicated for them 24/7. With all of the meds that I take for both reflux and the spasms I am still in great discomfort. I also have a hiatial hernia. I am just chock full of goodies. Further down on my trip down intestinal lane I have gastro paresis. The whole system is working to continually hurt, contract erratically and cause pain and discomfort.

That was my basis for asking for suggestions. I do try to eat small meals, I do sleep with my head raised, take lots of meds and have not found a food (including water) that does not trigger me. I have decided food is the enemy. I guess until there is a way to install a new intestinal tract in me that there is nothing new as yet.

You all had very kind suggestions and it only reinforced the idea that you are all very kind and willing to help. Now medicine needs to catch up and really discover a cure for all of us.

Thank you all.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Smurfette,

Someone else has already mentioned Acifex. It really has helped me. My doctor said after taking things for reflux so long it stops working for us so we need a change up from time to time.

Hope you can try it.

Bless!

Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

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Hi all, I am a newbie here, diagnosed with limited systemic sclero sine sclero this summer.

smurfette I am sorry to hear about your reflux and esophageal symptoms, I can sympathize fully because my problems are quite similar -- severe reflux, esophageal and gastric bleeding, large hiatal hernia for years. I'm on the strongest dose and combination of anti-acid meds there is, strictly follow all the lifestyle changes, but still get breakthru reflux/heartburn. I even had pneumonia last year that my doctor suspects was due to aspiration of reflux. I have asthma as well so this was quite serious and after my recovery they started talking surgery. My GI specialist and surgeon had already decided on a Nissen fundoplication for me but while doing all the pre-op tests, my esophageal manometry test showed "absent" measurable motility - my surgeon immediately referred me to a rheumatologist to see if I had sclero, which after MORE tests(!), confirms I do. All the doctors are in agreement now to go ahead with the surgery - they will repair the hernia as well as do a "partial wrap" of the stomach which should reduce the reflux, unfortunately I may have worsening of my swallowing difficulties, but at this point am willing to trade the reflux for a soft diet -- I'm kind of there already! The surgery is scheduled for early November, I will let you know how I make out!

By the way, while this is the first time I have posted, I have been reading these forums since my sclero diagnosis, I love the supportive concern and great suggestions everyone has, this is a great place and you all are wonderful!

red

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Hi Red,

 

Welcome to the Sclero Forums! I'm so glad you took the plunge and decided to post. Now we can support you, and I'm sure you will have great advice like you just posted for others.

 

I'm sorry for all of the problems you are having right now. I hope that your surgery is a great success and gives you some relief. Do keep us posted.

 

I look forward to knowing you better!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi, Red. I am glad you have finally decided to talk to us. biggrin.gif

We have a few people on the boards who have had the surgery you are facing. Here is our page on Esophagus: Reflux, Heartburn and GERD which has a section on Nissen Fundoplication with some personal stories at the bottom.

I wish you the best of luck for the surgery. Please let us know how it goes.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Welcome, Red!

 

I joined last week and have found the forums full of information and wonderful support. I'm sorry to hear about all your difficulties! Surgery is no fun, but hopefully you will get positive results that will enable you to improve your quality of life. It sounds like you have good. intuitive doctors who are working together. I have the same type of supportive, communicative, collaborating physicians, and I have learned this week how lucky I am to have that! Take care of yourself and I will keep you in my thoughts!!

 

Soaring Eagle

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Thank you all for your warm welcomes!

Yes, soaring eagle, I have great doctors for which I am very grateful, especially after following the doctor's postings this week! My primary doctor is wonderful, we've known each other for 30 years, he's taken care of me through some awful asthma times (lots worse when I was younger), and has tested me twice because he suspected RA - I have lots of achy, noisy joints, fatigue, sometimes low fevers, but never swelling - but came out negative, also tested a few times for hypothyroid, again neg. He was not surprised at all when the sclero diagnosis came, he said he always suspected something autoimmune was going on, now along with the reflux, it all makes sense. He tells me my rheumatologist doctor is probably the best in the Northeast USA (if you google sclero experts in the Northeast you get only my doctor and one more in New York City.) The sclero diagnosis is a bit scary, and I worry about the future, but am trying to focus on the positives - I'm in very capable hands, my echo and CT showed no lung or heart involvement, and for now at least, no Raynaud's or major skin signs. I am in awe of all of you, how courageously you are facing much worse problems than I have!

It's great to be among you all,

red

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