Limbo land

How odd. I vaguely remember joining here looking answers in 2012. I was pregnant with baby two and had just had a borderline result for SLE.

I had another baby in 2013 and was poorly afterwards. I have now been under the care of a rheumatologist since 2014 I have numerous bursitis the butterfly rash borderline test results still. I am however being treated with hydroxychloroquine venlafaxine and pregabalin and have to have steroids about every three months to dampen down the pain. As I understand it I can stay in this hiatus of no definitive diagnosis forever.

Life has deteriorated significantly in the last two years.

I cant walk very far at all. I am in pain daily and I have become significatly photosensitive i was before I had Hydroxy to be fair. My hands and feet have taken brunt of the pain. I am awaiting to see my GP as it appears I have developed psoriasis another autoimmune disorder. I have awful night sweats . I am still trying to work out my triggers that cause flares which currently include

Stress; Aspartame; certain spices; alcohol; sun; lack of sleep;

Any one else in here still with out the formal diagnosis but treated as though you have SLA

1 Reply

  • Hello. Very thankfully I'm no longer in a state of limbo - but I'm still not on any modifying treatment and I am 53 and post menopausal. I got rediagnosed a month ago with primary Sjogren's Syndrome from ANA and positive lip biopsy. I was diagnosed five years ago with seronegative RA - and if I hadn't fought so hard for answers (with the help and support of many here), I would still be on a watch and wait shelf, labelled only with a diagnosis of polyarthritis unspecified.

    In fact if I hadn't had such serious allergic reactions to four DMARDs including Hydroxy, I'd still have been on Methotrexate with Hydroxy, still diagnosed with seronegative RA, worsening systemic symptoms ignored, treated topically as "merely nuisance".

    Having a proper diagnosis at last feels really good I admit. But there is huge amount of ignorance among the general population and the medical profession about Sjogren's - which in primary form is rare - so it's hard to garner good information or support specific to this disease/ syndrome. RA was definitely classed as a comparatively big gun disease with many more treatment options for rheumatologists and GPs. So finding out that I have a multisystem connective tissue disease rather than RA is a mixed blessing.

    Do you have a rheumatologist still? - if not I would push for an urgent referral, given your worsening symptoms and the psoriasis. Psoriatic Arthritis could be a possible disease for you and I'm not sure whether Hydroxichloraquine alone is an appropriate medication for this. You may need immune suppression. Certainly your bloods need rechecking for autoantibodies regularly - but be warned - mine only showed up properly once I was off DMARDs and steroids and these had cleared my system properly.

    Hang in there with pushing for answers and trust your instincts.

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