ACID REFLUX – Scleroderma

[Cubby]

 I have created the Scleroderma Family Message Board  at http://www.sclerodermafamily.proboards.com.   Please come over for a visit!   We are not in competition with ROADBACK, just another place to chat about Scleroderma.

One of the ladies posted this, and some others asked me to post it over here as well.  Most of us with Scleroderma have stomach and esophagus problems and most of  us take something for it; like me, I take ZEGARID.  After you read thru all the medical info, the  bottom line seems to say that we think we are OK from taking the meds, but that the reflex is not gone. We just don't have symptoms.  This article speaks to the fact that surgery could be necessary for some of us.    I am symptom free, but will be taking this to my doctor for comment.   Thought some of you might be interested.   SO HERE IS THE ARTICLE:

Research News from The University of Chicago

Connective Tissue Disorders and Gastroesophageal Reflux Disease. Pathophysiology and Implications for Treatment.

Connective tissue disorders (CTD) are systemic diseases that can affect several organs. They share the common features of cutaneous and gastrointestinal tract involvement, most commonly esophageal dysmotility and gastroesophageal reflux disease (GERD). Up to 40% to 60% of these patients can develop complications of GERD such as an esophageal stricture or Barrett?s esophagus. In addition, the lungs are often involved by the disease process, and 60% of patients eventually progress to end-stage lung disease (ESLD) which causes severe morbidity and mortality. When GERD is present, patients are usually managed with acid-suppressing medications on the assumption that because esophageal function is routinely deteriorated, antireflux surgery would create or worsen dysphagia.

We recently evaluated by esophageal manometry and ambulatory pH monitoring 48 patients with CTD, 20 of them already on the lung transplant list**. We found that esophageal peristalsis was preserved in all patients with CTD and GERD. In contrast, peristalsis was absent in about half of patients when ESLD was also present. Ten patients underwent a laparoscopic fundoplication tailored to the esophageal function of the individual patients. This tailored surgical approach resulted in control of reflux symptoms in all patients.

The clinical implications of this study are very important. It is reasonable to suggest that severe esophageal involvement can cause or contribute to the development of pulmonary complications in patients with CTD through repeated episodes of microaspiration. An operation is the only way to stop the reflux to occur, as it creates a new valve between the stomach and the esophagus. However, patients with GERD and CTD are usually treated with acid reducing medications based on the unproven fear that a laparoscopic fundoplication would result in severe dysphagia. Data from many recent studies show that treatment with acid reducing medications only affects acid production and raises the pH of the gastric refluxate but reflux still occurs as the frequency and duration of reflux episodes is not affected. This observation explains the persistence of symptoms and mucosal injury while on proton pump therapy, and it suggests the need for an antireflux operation to restore the competence of the gastroesophageal junction and stop any type of reflux, independent from its pH. In addition our results show that the operation is safe and effective.

In summary, we feel that patients with CTD should be screened early in the course of their disease by esophageal function tests. If GERD is present, a fundoplication should be offered early to prevent esophageal (esophagitis) and extra-esophageal complications (lung problems).

** Patti MG et al. Journal of Gastrointestinal Surgery 2008;12:1900-1906.

[mschmidt]

This is a very interesting article–not sure surgery is the only answer but, the information about anti-GERD meds makes sense to me.  I always thought that it treated the symptoms, not the underlying problem. 

On my 1st visit with Dr. F, he told me that I absolutely needed to elevate the head of my bed 6-8 inches because not only does the minocin cause reflux, if any GERD issues were present, the worst position to be in is lying flat on your back.  He said that doing so would fry my lungs.  You can also use a firm wedge pillow, but need to make sure that it elevates you from the shoulders up, creating the same position of an elevated bed.  I did this as soon as I returned home from California–he scared the heck out of me!!

Maria

[Kim]

Thanks for the link, Cubby.  Glad to hear you're doing so well. 🙂

kim

[Cubby]

Yup!!!! THANKS TO AP, I am just about in remission from scleroderma.   I also do PHOTOPHERESIS with it, but I still feel that the AP is really what is doing it.  

[richie]

Hi

While apheresis has value– bet its the antibiotic that did it !!!! I also am puzzled by the conclusion that “meds control symptoms but the reflux is not gone “—-I think this is one example where no symptoms –no reflux —-its a well known fact that scleroderma can cause damage to the esophageal sphincter which results in reflux –as long as meds keep the reflux under control to the point of no symptoms –there certainly is no reason for surgery –especially with a person with scleroderma where any type of surgery or trauma can kick off the scleroderma again –obviously if meds cant control the reflux then and only then surgery is an option mainly because untreated reflux leads to many more esophageal problems —I think thats a study that really said nothing –that grant money could have been spent better to continue a search for a cure to SD —

Richie

 

[Cubby]

RITCHIE:  I secretly always thought it was only  the antibiotics too, till I had some minor reoccurences of burning last year.   I increased my photopheresis treatments and it all went away.  This happened twice.   Sooo, the Photopheresis, in my case, definitely has helped. 

I know about 30 people on AP and have met several of them.  Some did just the AP and are all getting better and 2 of them are in full remission.   Some others do AP with cellcept or cytoxan and are doing well, with all symptoms gone, but their docs do not consider them in remission since they still do the meds.  I am the only one I know doing Photopheresis with the AP.   My doctor had one patient in full remission by doing just the Photopheresis and according to my doctor and my nurse, the lady was as bad as I was, at my worst.      She has been in remission for about 4 years now.   They no longer treat her, as she moved out of state, but they all keep in touch.

So, for some, they need more than just the AP.   Weird, huh?

Regarding the acid reflux, I always thought that the meds were taking it away till I read this article which seems to say the drugs are just “masking it”.    I am telling u, I won't be having any surgery anytime soon, but I will definitely be showing the article to my doc. he and I do not always agree on everything, but he is a good friend now and I value his input.   I posted this article, only at the request of someone on my board which is http://www.sclerodermafamily.proboards.com.  Please visit sometime.   We are not in competition with Roadback.  CherylF knows all about us and gives us her blessing.

 

 

[richie]

Hi

I did visit last night and even posted –good job !!!!!!

Richie

[Cubby]

Ritchie—  I saw it!!!   So glad you joined us!

[A Friend]

[user=117]Cubby[/user] wrote:

Yup!!!! THANKS TO AP, I am just about in remission from scleroderma.   I also do PHOTOPHERESIS with it, but I still feel that the AP is really what is doing it.  

 

I believe this is the link to the information I shared below.  I created a new topic, named something like…. 'The Most Important Thing…..' and the following link will take you to it:

Edit:  http://www.rbfbb.org/view_topic.php?id=2681&forum_id=1

Cubby,

I've just (for the first time) read posts from this thread.  I do not have SD, but my diagnosis was most closely MCTD (Mixed Connective Tissue Disorder).  After quite a few years now, I… for the first time … recently read a statement about how connective tissue is a fine layer of tissue all over our body, and can become diseased with an assortment of fungi and other organisms as we become chronically ill.  This makes our body very unhealthily acidic, and furnishes a constant food source for the organisms to multiply and make us even more acidic.  Among other things, this acidic state is said to be a perfect seed bed for cancer.  These are in the connective tissue that is there to “nurture” us and our bodily needs, and becomes polluted with their presence.  The fungi, etc. don't have to look for food, or go far, we are readily available with our acidic layer of connective tissue.

I paraphrased above what I remember reading about connective tissue.  With the above in mind, information about our pH and overacidity becomes very, very important.  When this connective tissue pollution becomes widespread with these unfriendly organisms, the best paper I've found states that this makes us very, very acidic (unhealthy, and predisposed and susceptible to “cancer, heart disease, osteoporosis, arthritis, and many other degenerative diseases.”  Let me add, it can also create all sorts of havoc and pain.  This, no doubt in my mind, is what happened to me over the course of the first two years of an infection in my jaw area that my body could no longer contain and keep harmless — and, not knowing about this, it continued in varying degrees.  Then the fun (not!) began!!! 

I just came to the board to add the new pH article/information I found under a new topic.  There has been much information on this subject posted, but this is one of the most comprehensive and easy to print and use and understand ones I've found.  We don't (and probably won't) hear this from our physicians — I hear they were taught there was nothing to it.  In my own course of finding answers, along with Dr. Brown's AP type protocol the information in this document was what finally has rescued me.  Some of us are far more susceptible than others.  I'm hoping my body still has the capability to turn around the damage that resulted.  In addition to following my Minocin protocols, I believe paying lots of attention to acid/alkaline balance is key to creating a healthy internal environment in which to get well . 

AF

[Cubby]

Ritchie, that's what my doc said.   I am not at a point where surgery would be needed for me.  However, perhaps for those who need it, it works.  

[Cubby]

AF:   Very interesting information, thank you!

[JBJBJB]

[user=117]Cubby[/user] wrote:

There is a lady on the INSPIRE board who calls herself MARIASMOM. Her daughter is 14 and might not live. Docs are trying to keep her alive till she is in her 20's????They have her on gleevec and I forget what else.

I can't remember who had stem cell or bone marrow transplants. Please let me know and tell me if she can contact you. 

 

Cubby,

I read your message you posted from your own site. She can contact Dr. Richard Burt of Northwestern University in Chicago. He has been doing the stem cell transplant and has been pretty successful. Some folks who have lungs/kidney involvement due to SD have been recovering pretty well. Of course, there isn't any risk. I believe a few people died due to infection.

Victoria has been actively updating her recovery story of stem cell transplant. Perhaps you could go from there. http://victoriasmiracle.blogspot.com/ IMO, this is the “last weapon” for SD patients to use if all else failed. 

JB

 

[Cubby]

JB Thank you for the info.  I just sent mariasmom an e-mail with  your info.

[Rosey UK]

Hi AF

Can you tell me where to find the info you read  about the PH?

Thanks Rosemary

Hi Clubby
I joined your scleraderma forum tonight to learn more about whats going on. When I read your message about reflux and lung problems I was really worried as I have all this and take PPIs I have pulomonary fibrosis to which I have just started a homeopathy treatment put together by a 5th line homeopathist.  I was told I have mixed connective tissue dissorders , lupus/scleraderma and RA. I have sjogrens, raynauds but my digestion isn't good at all plus I have osophagiel spasms. I'm sick of it I started IVs clyndamycine last month and I have taken oral AP for about 18 months not doing too well though and this IV doc has changed my orals from doxy to minos.

You say  you have had Photopheres treatment can you tell me what this is about as it sounded like it was good for you and  your acid reflux  was made better? Ive never  heard of any treatments before.

Thanks for any information.

Rosemary

[Cubby]

ROSEYUK:    I think you will be please with the IV antibiotics.    When you were taking the Mino, was it the brand name, MINOCIN or the generic, MINOCYCLENE?   For me, the brand name works better, but my insurance pays a lot of the bill.   Here is the info on the PHOTOPHERESIS.

 

THERAKOS (Brand name) PHOTOPHERESIS is a procedure whee I go into the hospital as an out-patient and am hooked up to a machine.   A small portion of my white blood cells is extracted,  treated with medicine,and then briefly exposed to UVA LIGHT, then the blood is retuned to me.   In my case, I go 2 days in a row, every 8 weeks now.   In the beginning, it was every 3, then 4, etc. The biggest problem is the cost, which  is $12,000 for each 2 day treatment.  My insurance pays  most of it.

Photopheresis is thought to help restore the body's natural ability to maintain a balanced immune system.      They think that when a number of overactive immune cells are reduced and the immune system is stimulated that it brings the system back to balance.

Frankly, I thought the AP was doing all of it for me as it does for most people.    I also always questioned whether or not the Photopheresis was working.   However, last Fall I had a little flareup where my hands and feet started burning again.  I went nuts!!!    I had my treatments changed back to 4 weeks.  The burning stopped and  I am back up to 8 weeks, no problems.  I no longer feel like I ever had scleroderma, even tho my fingers are still a little bent.   Hope that helps.  My e-mail is cubbymikey@aol.com if you ever need to contact me.

 

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