Quote:
Originally Posted by MAT52
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.
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This is why I offered other options...like the Cellcept. Or doing the phone consult with Birnbaum (if he and her doctor would even participate). You may not have gotten much benefit from Cellcept, but you are still taking it, so it must be doing something good. She has A.S., so this may help that as well. And I did have positive benefit to neuro pain/symptoms when I tried it for several months before having to stop due to the infection (caused by a different issue). Certainly worth trying!!
I wonder if the US went to a national health system, like the UK whether we would no longer be offered the treatments we get now? Scary thought as the US tries to get a handle on it's health care crisis. I fully believe that your doctors in the UK know (without a doubt) that these treatments are effective. There is so much data on this...and GOOD doctors read up on new treatments (and IVIG has been used for this for YEARS). It comes down to money and NHS can't offer treatments like this. My IVIG costs about $32,000 USD a treatment each month!!! I'm sure it would be hard for a doctor to tell a patient that there is an effective treatment, but they can't have it.