Scleroderma esophagus: effective treatments?

Hi, All!

I was wondering if any of you have been diagnosed with scleroderma esophagus.

I am hoping to connect with someone else who suffers from this condition and ask them some questions about (1) what medications they use to treat the underlying autoimmune disorder and (2) what medications (or, better yet, natural alternatives) they use to promote esophageal motility.

My back story is that I've had mixed connective tissue disease (lupus, scleroderma, polymyositis, etc.) since 2010. My esophageal issues must have been coming on for a very long time, but I didn't suffer from them at all until April 2014. I was lucky enough to receive a proper diagnosis the following month, but I was deeply saddened to learn that, when I swallow, my esophagus only contracts 1/3 of the time. My lower esophageal sphincter doesn't stay closed either, so I used to suffer from acid reflux but I've got that under control first through copious amounts of PPIs, and now an almost all natural approach. (I still take some OTC Pepcid before bed.)

When diagnosed, I already had a rhuematologist for my MCTD, and then I acquired a GI doc for my esophagus, but I'm not doing well. I continue to struggle with each meal and suffer daily from severe radiating esophageal pain and shortness of breath. I am 25 pounds underweight and no longer absorb vitamins and minerals properly, as I periodically contract bacterial overgrowth syndrome of the small bowel. I believe this weakened state is preventing me from recovering from the severe MCTD flare that first revealed my esophageal disorder back in May 2014.

My rheum has tried Mycophenolate Mofetil (CellCept) and now we are trying Methotrexate. I've been on the Methotrexate 2+ months now, and it actually seems to be aggravating my esophagus -- making eating more problematic and painful.

My GI has tried Domperidone, which I could not tolerate. Given the frightening experience I had with Domperidone, I will, under NO circumstances, try Reglan.

If you suffer from this condition, too, would you be so kind as to respond and let me what medications you have tried for the underlying autoimmune disease?

Any other coping techniques you may have time to share with me would also be great.

Since May 2014, I have been eating a very limited soft foods diet, and even that requires copious amounts of warm tea to facilitate food successfully traveling from my mouth to my tummy. Even though I am quite ill (in other ways related to MCTD), I try to walk 20 to 30 minutes every day, which my GI says also helps digestive motility.

I thank you in advance for reading this post, and for replying if you can help me learn more about this condition and treatments.

Best regards,
Zebra

I have been having major issues with swallowing for the past week. I am diagnosed Lupus however my ANA pattern was more predominant with Scleroderma so sometimes I wonder. I started having all kinds of digestive issues 5 months ago. It has now gotten to the point that when I swallow I feel like I have food stuck in my throat and as if I cant swallow properly. It has really been freaking me out as I am sure you probably know. I also suffer from shortness of breath. I too am very underweight and I have lost 13 pounds in three months. I am down to 85. I went to the ENT and he said that my esophagus was irritated but it doesn't make sense as to why I am unable to swallow. I told him that I cant swallow well because it feels like food is getting stuck (duh). Honestly I don't know exactly what my issue is whether its GERD or Lupus or both or maybe it is stress like some docs try to blame it on. I have been very stressed lately but that stress is from not feeling well everyday. Right now I have been taking gavison liquid which seems to help my throat and im also on 40 mg of Nexium and I am watching what I eat. I have taken plaquinel for Lupus I am not sure if it helps with Sclerma or not. I have never felt this way in my life, I am someone who loves to cook and go out to eat so this has been extremely distressing. Hopefully getting a endoscopy done soon.

Im really sorry you are going through this. Eating use to be so easy, I didn't even think about it until all this happened.