Quote:
Originally Posted by en bloc
The NHS does have strict criteria for use of IVIG, but this positive lip biopsy should open the door for you. Have they already told you that you won't get IVIG (after you have the new lip biopsy results)?? If so ,what is there reasoning?
Yes, I have also used Cellcept. It was helpful for some of the neuropathy symptoms and pain. However, I got a life-threatening infection and had to stop taking it. I have an immune deficiency, so this complicated my situation. Most people do just fine with Cellcept...so don't let my experience keep you from trying it.
I have not tried Enbrel, so have nothing I can add about this treatment.
Don't let the 'sero-negative' label keep you from getting proper treatment. Your lip biopsy just changed the outlook of that label. The lip biopsy is the gold standard for diagnosis...so holds a lot more weight than a blood test.
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En bloc I’ve got to agree with Joanna on this sadly. As you know I too have seronegative Sjögren’s and have been told by two neurologists, a vascular doctor and the UK’s main Sjögren’s specialist recently that IViG wouldn’t be a consideration for us. I told her that I come here and the Sjögren’s World forums and know that people with SFN relating to Sjögren’s in US have benefited from IViG. She looked surprised and said it is a terribly expensive and scarce resource and even those with GB and CDIP only get a few infusions and then would be switched to an immunesuppressant such as Cellcept. So it’s a non starter for us I’m very sorry to say. I don’t think Cellcept is doing anything for my neuro symptoms but it has helped my arthralgia/ inflammatory arthritis I think.
11-16-2017, 03:45 PM
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