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Old 08-07-2016, 02:04 PM
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en bloc en bloc is offline
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Join Date: Feb 2011
Location: Shenandoah Mountains, VA
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10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
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I get what you are saying about the scleroderma and only having very minor signs on the toes and one elbow. But this is why it is very important to be thoroughly checked NOW. If it is in very early stages, then this is when it needs to be caught and treated for best outcome. Those who don't get Dx'd until all the fingers and toes are effected are well into the course and outcomes aren't always as good since it wasn't caught in early stages.

Whenever you have confirmation of an AI disease, then it is crucial to double check symptoms that may related to other AI disease, as 'overlap' is common and changes the treatment factors. I have overlap to include Sjogren's with ganglionopathy/neuronopathy, APS, and now Psoriatic Arthritis...ALL autoimmune based. And you are correct...spondyloarthopathies ARE immune based. I just saw my neuro/rheumy at Hopkins this past week and we discussed the confirmation of my new inflammatory arthritis (PsA) in this class. Once you have an AI disease, it is very common to add others on.

I don't have any experience with Rituximab, but several on the Sjogren's board have tried it, some with success in reducing symptoms. IVIG is far better (and documented) for neuropathy from Sjogren's...but needs to be caught early, as in any condition, for best results.

I would agree with you (just in reading your posts) that you have NO psychosomatic elements to your symptoms!!

As for the constipation...autonomic neuropathy is NOT the only factor here. Just because you don't have severe dry mouth, doesn't mean you don't have 'dryness' elsewhere. Moisture producing glands are throughout the body and Sjogren's effects EVERYTHING with moisture (which is pretty much everywhere). Joint fluid, skin, GI track (entire), eyes, mouth, vaginal, vascular, etc, etc, etc...the list goes on. So your constipation is likely a combination from autonomic neuropathy and Sjogren's...which causes changes in stool due to lack of moisture. Miralax (not sure if you have this in Scotland) works by pulling moisture from the colon to aid in constipation.

You will likely need to add a few specialist to your medical team as Sjogren's effects so many things that are beyond PCP care.

Needless to say, a cardio might be wise as well, to evaluate the palpitations. Autonomic neuropathy effects cardiac function as well...in many ways.
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"Thanks for this!" says:
glenntaj (08-08-2016)