Sjorgren's Syndrome

I live in Gt Britain and was only diagnosed 3 years ago after experiencing a myriad of symptoms for the previous 48 years. In many ways it was a relief to get a diagnosis! Pretty well all the glands in my body are now affected but it is the neuorpathies that I struggle the most with. My gluten and dairy free diet helps my digestion but I am finding that the lyrica is not helping me very much. I am experiencing lots more muscle pain and sometimes don't know which way to turn. Why is this so?

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  • Hi, I also live in the UK, I have secondary sjogrens, my primary being APS/Hughes.

    I cant answer your question but wanted to say hello.

    Yes its a relief to be diagnosed then we have a whole host of other questions. I am taking hydroxychloroquine & low dose neltrexone, which have both reduced my symptoms.

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  • Hello - I'm in Scotland so a UK member too. I'm on the immunesuppressnt, Mycophenolate after a few years of MS- like symptoms. I was initially misdiagnosed with RA in 2011 after a lifetime of autoimmunity. I'm 54 now.

    The neurological aspects of this disease seem to be progressing regardless but I think Mycophenolate has helped a lot with the joint and tendon type pain. But like you, my neuro symptoms distress me more. Plus the awful fatigue.

    I'm starting to look into a treatment that is considerably less toxic called LDN. I don't yet know where to get it from and i would have to stop taking the Mycophenolate in order to take it. So I'd only do this after discussion with my rheum.

    But I've tried four other DMARDs and failed to tolerate these and told I'll be offered nothing else. I couldn't tolerate Gabapentin, Duloxetine or Amitriptyline so I won't be giving Pregabalin a try. These drugs only mask the neuropathy anyway.

    Have you tried Hydroxichloraquine yet - some swear by it for their Sjögren's?

  • Hi Barbara,

    I got diagnosed just over a year ago. I have a load of chronic health issues, some I have had many years, most have been attributed to primary sjorgens now. Most have got a lot better since I have been taking hydroxychloroquine. I have had to gradually increase the dose to max over a year. One thing it has really helped with is muscle pain. My muscle pain was so bad that at one stage, I couldn't walk to the end of my drive. It was a difficult time, as I am used to being active. My family are active , we all enjoy walking, tennis etc. I felt isolated from our usual activities and found it quite depressing, thinking that I would never recover. I couldn't even travel far by car , until the pain was too much. All very limiting and again, difficult mentally. I have empathy with your statement of " not knowing which way to turn " it echoes how I felt . Assuming you have a rheumatologist , hydroxychloroquine may be useful if you haven't tried it. Worth suggesting to rheumy in any case.

    I recommend the Zentiva brand only if you have stomach problems like me. Quinoric brand was awful for me, nearly gave up on the drug altogether , until I sourced Zentiva.

    The other thing which helped me was physio, predominantly for bursitis / tendinitis , but it also gave me specific exercises to build strength and gave me confidence to move my body more. This in turn helped me. Not sure if any of this is relevant to you, but thought you should get some feedback. Sounds like you're having a tough time.

    Claire

  • I'm in the UK too and have just had my diagnosis changed from secondary to primary Sjögrens. Just trying to get my head round the implications.

    Has anyone tried rituximab? What's it like having an infusion? Any nasty side effects?

    I had very unpleasant ISRs with Enbrel and wonder if that means I would also have problems with other Biologics?

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