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Originally Posted by MAT52
Hi I'm new here and this thread is fascinating to me. I have been on many forums but none where people know so much about their conditions and the scientific aspect of these!
I am still on a very slow path to diagnosis and am really anxious that my SFN will be branded as "idiopathic". I do have a confirmed diagnosis of Rheumatoid Arthritis and have spent three years on steroids and DMARDs but haven't tolerated three of these now and have also failed to tolerate Amitriptyline, Gaberpentin and now am not getting much from Cymbalta at all.
I have learned from my GP that my lumbar puncture shows high immunoglobulin - which he says confirms that my symptoms are immune mediated at least.
I have very dry eyes but no blepharitis and my mouth gets dry, especially on certain medications - but my oral hygene is good which my dentist says it wouldn't be if I had primary Sjogrgens. The neurologist said that my Sjogren's antibodies are negative and sees no purpose in my having a lip biopsy. As I have RA the Sjogren's is very normal as a secondary condition.
It sounds to me as though you need immune suppressant drugs. Hydroxichloraquine is the gold standard disease modifying treatment for Sjogren's and also for Lupus, RA and other connective tissue diseases. Unfortunately it made my face and lips swell and gave me a painful rash after a year - although it worked very well for inflammation and many tolerate it fine.
Topical treatments to keep your eyes from developing corneal ulcers are very important. I use Lacri-lube at night and Hylo Forte drops (preservative free) during the day -sometimes hourly. Keeping the mouth moist during the night is important too and avoiding sugars and keeping your mouth as clean as possible is very important. A good rheumatologist should be able to diagnose Sjogren's with or without positive antibodies but I think there is a lot of ignorance about this disease and the ways it can affect a person. Dentists and opticians tend to see it more realistically.
A good optician should be able to perform a tear break up test on you and see whether you have enough tears. A good dentist should be able to see how much saliva your glands are producing. I also have Salivex pastels to suck when my mouth gets dry - they are really good.
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Hi,
I also have been diagnosed with RA. I have a rheumatologist that has been working with me for 2 1/2 years now, trying to put a diagnose to all these different symptom I have had
My RA presented at first with neuropathy pain. I was diagnosed with Sensory Motor polyneuropathy and small fiber neuropathy by a neurologist.
I was wondering: you said you have had a Lumbar Puncture which showed elevated immunoglobulin. You also mentioned that your primary doctor was advising you on this.
What did your rheumatologist say about the LP result? ---I am just wondering, perhaps she would say that Rituxan treatment could be used for your RA. This drug has fairly recently been approved for RA. And, the good news is, that it can help for the SFN. And especially, if the SFN is immune related, then I think Retuxan would also benefit this condition as in a bonus effect sort of say. This is my understanding, but you have to ask.
You see, I was hoping ( in a way to have this, even though it is sort of heavy duty serious IV treatment ) My rheumatologist had been thinking of this.
I also had a LP, it was pretty negative.
And, there is a test for RA called VectraDA. It is a test that can monitor the effect of treatment, and it measures the disease activity by 12 protein biomarkers. --- Look it up at
www.Vectra-DA.com
My last question to you, How is your SFN symptoms?
Best of luck