Quote:
Originally Posted by en bloc
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 once again Enbloc. It's great to have you here helping me get my head round it all. Sorry that it's bit one way. I hope that you have someone equally wise advising and explaining things to you in the way that you always do with me here and on the SJS World forum.
You have a very good point about the dryness. My husband hasn't looked up SJS yet (maybe never will!) but when I gave him a brief verbal synopsis he commented, "well I've known you since we were 19 and you've always had so much dryness everwhere - I'm amazed you don't have visible cracks!". I had total alopecia twice as a kid and once post gestationally, and was always caked in eczema and had severe blepharitis and frequent conjunctivitis (not painting a very glam image of my younger self am I?
).
And my sicca has been flaring for a month now - then will come nose bleeds from dry sores at the top of my nasal passage. It's a cycle that I'm getting familiar with. And itchy scalp always although no dandruff. Ugh!
But the rheumy registrar explained that scleroderma was unlikely if my main rheumatic disease began five years ago, because by now I'd apparently have Calsinosis and digital ulcers. I don't think I would necessarily because this started to show up as RA and I've been on aggressive DMARD therapy for a few years although off these for a year now. But these drugs would have slowed Scleroderma or Sjogren's or both down significantly anyway.
But still a lack of skin involvement makes it less likely for the time being. Anyway it can be ruled in or out by a nailfold capillary test though and my hospital is the second best in the UK for Scleroderma - second only to the Royal Free in London. So I should know soon enough but I've photographed my nails and looked close at the folds and can see no sign. But it does need a microscope and some drops of oil to know for sure of course. I hope I'll be monitored well now but I do have to return to my old island home for six months over the winter. I plan to come down once a month as our house is being made habitable by builders and I can attend the doctor and hospital appointments while I'm here. It does complicate things a bit but can't be helped.
Have you come across anyone on DMARDs and IViG I wonder? Is Myco used for connective tissue diseases in the States? And if so have you heard of people with SJS who are successfully treated with Mycophenolate Mofetil? If these could be combined then that might lead to a good outcome for me possibly. Oh well I will just have to be patient. Not the easiest thimg for me at this stage I admit!