I am a new member, dx about 6 months ago, but had symptoms yrs prior. Am seeing a wonderful new Rheumatologist, but he may want me to have a lip biopsy. Has anyone had one and how did it go? Thanks.
I did not have the lip biopsy. The question that I am starting to ask after years is why do I need this test and how will it change my treatment. In the case of the lip biopsy, I was already bring treated for another autoimmune disease so it was mostly about symptom management. Putting me on Evoxac for the dryness was a no brainer and symptom management for my eyes as well. I just started a new med for the neuropathic pain with out doing the nerve biopsy either. It wouldn’t change my treatment.
I didn't have the lip biopsy either but I've heard the subject come up a number of times before. Hopefully some of those members will chime in now. I have to agree with Stoney, though….how will it change your treatment plan, etc are good questions to ask. SS means endless advocating for yourself.
The past discussions are searchable- if you click on Discussions in the top menu bar, then go to 'All Discussions', and look for lip biopsy, it will help you find when it's been discussed before. I did have a look, but the only ones I could find were a little negative- some people have found them quite painful- so I haven't given you any links, I thought it's better if you search yourself!
The other concern with the lip biopsy is that they are not always definitive. It’s a somewhat invasive biopsy and it seems fairly common for people to complain of some minor numbness after. I’m not sure that I would have agreed to it had it been offered. But I am already under treatment for another autoimmune diseases so it is somewhat less critical to me.
Doctors love to do tests. I am a nurse who became an APNP in anesthesia. I was diagnosed by symptoms and I believe that is enough. A lip bx is intrusive and we all have impaired immune systems. aLso every procedure they do is more money for them. I know this sounds cynical but after working in health care my entire life that’s what I see.
I had a rash on my arms for a year. I finally let them bx it… It didn’t show anything at all.
All this is just the way I see things. I was diagnosed in 2009 but in retrospect I’ve had autoimmune disease for many years.