Looking for information / help

Posted , 4 users are following.

Hi. I do not have sgodren’s but a family member does. Recently she has been losing a large amount of weight and is currently weak and I believe that her body is “eating” her muscle in order to survive. She has trouble swallowing and eats very little due to pain eating. Her diet is also heavily restricted so I’m not sure she is eating enough protein. In the experience of this group, does this sound like sgodrens or possibly something else? Thank you all for your time. 

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2 Replies

  • Posted

    Possibly she is losing weight because her dietary intake is so restricted.

    Certainly gastrointestinal symptoms can occur in Sjögren's Syndrome. These can be quite severe. I lost 20kgs at the outset of my SS because of gastroparesis (paralysis of the stomach). My family were very worried. I then developed oesophageal and intestinal dysmotility. So my entire GI tract was either totally or partially paralysed. I didn't actually get diagnosed with SS for a further eight years despite many other symptoms, as my ANA's and ENA's were not raised

    Does she have other symptoms? Many symptoms can accompany Sjögrens.

    First though she needs to see a good Gastroenterologist to diagnose what is wrong with her GI system, get that treated, then see what evolves with the rest of her health.

  • Posted

    Hi brad,

    Sorry to hear about the difficult time your friend is having. I had pretty much the same symptoms and lost a signifcant amount a weight all in a few weeks. I could not swallow. My recommendation is yhat your friend should ser both a Rheumotologist and Gastrologist. Many disorders can resemble each other. There are different tests that can be run to being diagnosed. Besides bloodwork for autoimmune, i believe she should have a Manometry which measures swallowing. It is not the most confortable but can determine how severe her issue is. This is usually done through Gastro. In the meantime see if eating steamed zucchini and squash helps. Cucumbers with mayo, melon, ginger tea, tumeric tea and ginger hard candy helped me alot. It helps produce saliva. Biotene toothpaste and mouth wash helps. There are also mint chewable which help in the production of saliva which will help he/she swallow. I would first pay a visit to Gastro. Hopes this helps.

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