Quote:
Originally Posted by en bloc
I understand your thinking on this, but you might want to repeat the biopsy if they are considering any big guns. Knowing if you truly have SFN (and the extent of damage) would be critical info before even thinking of taking IVIG or Rituximab. One important factor to consider is having a baseline (which you really don't have since the biopsy wasn't done at the proper location or in more than one site...not to mention your question of handling/transport, etc.) Once you start a big gun treatment you will never know the original amount of damage and/or if the treatment is working. This is one of the great benefits of this test is that is is repeatable (many times) to gauge progression of disease process or documenting improvement so you know whether to continue treatment. And of course, the test is very minimally invasive with just tiny punches of skin being removed and simple bandaids for dressing.
Also, I can't image they would start a big gun if you didn't have confirmed SFN from the Sjogren's. They don't use Rituximab or IVIG for SVID or autonomic dysfunction. And I don't think you have said you have any organ involvement either (other reason to use these big guns). So confirming the SFN is really important if they still want to even think of a big gun treatment.
Just food for thought.
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Yes - I have only just begun to think along these lines myself Enbloc but you may well be right.
My rheumatologist hasn't mentioned this option though. He seems to be thinking that progress of SVID will warrant a big gun of itself. In his clinical letter he is asking the neurologist to compare the two MRI scans and tell him whether these show progressive SVID which is in keeping with Sjogren's as he suspects - in which case he feels a further immunesupnpresant or a big gun is warranted. So his questions of neuro are two fold - have I got white matter showing SVID? And is the white matter sufficiently progressing in line with my Sjogren's? If answer to both is yes then he or his successor should consider these. IViG is not mentioned.
The CT a week ago was to look for other organ involvement. I take it that this showed none as I haven't heard anything yet but the MRI nurse said she wondered if he was trying to get all the info he's requested on his desk so he can look at the bigger picture. So not 100% sure about this either.
My feeling is that if nothing shows up that makes further immunesuppressants available to me I will ask about getting punch biopsies done. But last night I looked to see where UK Sjogrens experts were who might commission these biopsies. And this research confirmed that there is very little expertise for SS in the UK. The few that exist are in Newcastle and London. So your experience of investigations and treatment for SS is going to be very different to mine. I can't afford to seek this expertise out privately so have to hope that the knowledge is in this large university teaching Hospital - but just hasn't shown up on the expertise list yet.
To my dismay I found that there is a new alliance of rare rheumatic disease organisations in the UK and Sjogren's isn't even listed. This shows how far we have to go here in the UK I feel. It seems to be way behind other countries and on the NHS Sjogren's page neuropathy isn't even referred to. On the Patient.com page it says everyone with Sjogren's will have dry mouth and eyes. And yet in the BSSA magazine it says that some will present with neurological symptoms long before the disease manifests significantly in mouth or eyes.