Sjogren's Syndrone/Raynauds Prognosis

HI there,

I have suffered with Raynaud's since I was in my teens (now 45) and in 2007 I was diagnosed with Sjogren's syndrome. My symptoms are overreacting to the cold temperatures, i.e even in the chilled/freezer section of the supermarket I get numb hands that turn white, cold feet and generally just feeling the cold differently to everyone else around me, my eyes are dry and I take eye drops daily and my mouth is dry and I chew gum most of the time to help produce saliva. My teeth and gums are all good. Every now and then I become very lethargic and get muscle/joint pains. My last blood test my ana came back 2560 speckled pattern, last time it was 1280 and I have slightly elevated RA. No other positive tests.

Currently I am trying to get life insurance and the insurers are really pushing back as they do not know enough about this auto immune disorder. In my mind I feel mainly fine other than reacting to the cold and having the dryness. I am pretty good most days and wouldn't really know I have anything. The insurers have asked for a detailed doctors report with a prognosis on how the disease will progress. I just wanted to get a feel for whether this is a progressive disease or are there people out there that just live with mild symptoms all their life?

If there is anyone out there that has started with the same symptoms as me and has had the disease progress I would like to hear your story.

Thanks!

7 Replies

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  • Interesting. I've had Raynaud's since I was a child. I also suffer a lot of problems with dry eyes and eye infections - Marginal Keratitis. Recently I've also had problems with a horrible taste in my mouth. I never connected these with Raynauds.

  • Hi there, maybe request that you get some blood tests and eye tests done to determine if Sjorgrens is linked,

  • Hi TT,

    I have been suffering from lung fibrosis, Raynaud's and Sjögren for over 20 years. It was worse in the UK, I live in Spain since 2004 and Raynaud's strikes only when I hold frozen food. Dry eye and mouth under control with eye drops and lozanges. There is definitely no progression, the symptoms remain mild. I have had 600 Ro antibodies in the 90ties, then 360 in 2009 and now in the last test 4 weeks ago 0. I think it is not possible to have my immune system beat every single Ro antibody so the test will be repeated in 4 months time. I do not have any lethargic moments since my move to Spain, swim an hour every day. I wish Spanish climate were available over the counter! It really improved my life quality beyond the wildest expectations.

    Best Wishes to you..

  • sorry to have to tell you that I started out just like you with Raynaud's and Sjogren's but no diagnosis. Then in my 40's I had a bowel prolapse and now at 72 I am fecally incontinent ,have PBC, achalasia, over whelmimg fatigue, reduced lung function and anaemia. All these things add up to Limited Systemic Sclerosis. I have no skin or joint involvement so no pain either so am lucky i that way.

  • Hello there, there is absolutely no reason why you would progress to having anything different to what you have at present. Most people who have sjogrens will remain with the symptoms of dry eyes, dry mouth and occasional joint aches and pains. Please don't be worrying yourself. Everyone is different, don't compare yourself with others who have different diagnoses. The best thing you can do is take good care of yourself, and get regular check up with a good Rheumatologist. Eat well, sleep well and stress little. (oh and by the looks of things move to Spain!! ;) All my best Lucy x

  • HI there, thanks to all the people who have responded, I really appreciate having people to share this with as no one around me understands the problem. As mentioned I have extremely mild symptoms and I hope that it remains that way. I moved from the UK top Australia 10 years ago and the climate change has definitely helped with the Raynauds, however, last year I really felt the cold in winter in Sydney so think I have completely acclimatised. I think I will be looking to move somewhere more tropical and warm for my retirement in future years!

  • Yes I feel your pain im in the same boat I have sjogren and lupus and fibromyalgia. Top of with iratiable bowel syndrome. I stay in consistent pain I can't sleep or eat with pain in my belly this is so awful. I sorry you have to go through this. Thank you for listening

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