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People with sjogrens - please advise


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Hi all,

I am part of a very unfortunate group of people in the U.K who have seronegative sjogrens and are suffering terribly from neurological symptoms because of it. I have full body small fibre neuropathy and rapidly progressive autonomic symptoms. I am very unwell as a result 

In the UK there appears to be little to no direction whatsoever on how to treat this - unlike the US where they are certainly more pro active. Most of us are offered DMARDS for this such as steroids or cellcept. Having read about studies in the U.S the approach is clearly quite different. I have even attempted to converse with a leader in the field in the US but without being a patient of his he is unable to discuss treatment with me. 

Please can anyone here who has sjogrens with neuro manifestations such as autonomic neuropathy and/or sfn please let me know what treatment they have/ have tried and whether they feel it has helped.

Thanks all

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Hi Jojo, 

I'm sorry I can't advise on any treatment as I am not as far along diagnostically but just wanted to reach out and say you sound very similar to me, I am in the UK also and in the process of trying to get a lip biopsy as I suspect Sjogren's as a possible cause for my POTS. 

I have always had dry eyes and mouth as far as I can remember, but that is a nuisance, not disabling like the POTS which was very sudden in onset. My blood tests are also all negative for the Sjogrens autoantibodies, but reasearch shows that younger women with predominent autonomic symptoms are more likely to be seronegative, at least for many years then some turn positive. The only definitive test is the lip biopsy. 

I have an appointment with an NHS rheumatologist on Monday and am currently collecting supporting research in the hope I can get a lip biopsy on the NHS. I also have some features of EDS and so does my dad, so I hope they can explore that avenue too. 

If I can't get a lip biopsy on the NHS I will pay for one privately to rule it in or out. Do you mind sharing how much you paid for this and where? Have you read POTSGrrrl's blog, she had seronegative Sjogrens too & was fortunate to get IVIG being in the US. I would also love to know if anyone in the UK is getting IVIG for autonomic neuropathy with Sjogrens. 

How old are you, and were your autonomic symptoms sudden or did they come on gradually?

I would be really interested to hear how you get on treatment wise and if you manage to access IVIG!

 

 

 

 

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  • 2 weeks later...

I have been diagnosed with POTS, dysautonomia, orthostatic hypotension, CVID, EDS III and SICCA (among other things). Every orifice of my body is extremely dry and uncomfortable. My opthamologist (who performed my video laryngoscopy) prescribes Restasis for the dry eye and my otolaryngologist prescribes Evozac for the dryness elsewhere. The gyn prescribes estrogen cream for yet another area. Due to my bone loss and immune deficiency/having had a pituitary tumor removed, steroids are not an option for me. I am on weekly infusions of gamma globulin for my immune deficiency. I have had trials of combinations of medications (i.e. Neurotin, Effexor, Cymbalta, Lyrica, Trazadone, Gabatrol (sp?)) for neurological problems associated with fibromyalgia pain, chronic myofascial pain and migraines but none of my specialists have been able to address the sensation I have sometimes of the sensation of a small insect crawling near my ankles/up my shin. I am told that my autonomic nervous system is failing. I am very sensitive to medications and do not achieve the deep phases of sleep without constant interruption (the stage of sleep in which tissue repair takes place). I do not know if you have had polysomnograms or not but it is something to consider. I have met others with neurological disorders who receive IV gamma globulin transfusions (that seemed to have helped with their ambulation/mobility). 

I really do not know if any of this has helped but thought I would offer my experience. 

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I'm sorry to hear you are dealing with so many chronic conditions rubytuesday.  Do you mind me asking which came first, or which symptoms you first noticed, and were your Sjogren's blood markers positive from the outset or were you diagnosed on a lip biopsy?

I am seronegative but with POTS (3+ years) and dryness symptoms (forever) & am going for a tears and saliva flow test next week followed by a lip biopsy.  I am also waiting to see a geneticist regarding possible EDS - I would have thought it rare for someone to have both these secondary conditions, yet I am seeing more and more people on the forums who have POTS and are diagnosed with both Sjogren's and EDS. 

I would like an answer as to why I have POTS but I am hoping it is not either of these as EDS isn't treatable at all and as jojo says in the UK at least there is not much treatment for autonomic neuropathy in Sogren's.  Did you find the IVIG helpful for your POTS?

 

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