Quite right Christine. I think we all have to make our own choices as to whether or not to have a lip biopsy. It works out for some, and not for others.
I also realise that for some posters a positive result would enable them to get insurance cover for their treatment. In fact, I suspect that would be the case for me as well, though I've never investigated it. I've never had any general treatment for the condition, just for the different symptoms - e.g. levothyroxine for my underactive thyroid, a steroid inhaler for lung inflammation, both of which are covered by my insurance, plus a variety of OTC drops and gels for my dry eyes.
I was offered a lip biopsy 13 years ago, but declined for all the usual reasons - not least the fact that my mouth wasn't at all dry at that point, so I suspected it would come out negative. So far I haven't regretted it, and of course there's always the possibility it could be done at a later stage if necessary.
I hope you continue to do well on your current treatment regime.
Pins and Needles I feel now in whole body. My feet turn purple when I come out of pool or bathtub the are scary. The Dr said of you must have neuropathy. The twitching is really bad the past couple of days. How long does it last? The pins and needles have been for about a yr I am waiting for them to stop. The Dr increased my Lyrics. How long have you have your Pins and needles and twitching. Has it happened before?
too true Christine and no 2 Drs seem to agree as far as the 2 rheums I have seen, go. One said if no symptoms for 1 year then I could reduce to 200mg to once daily for another year and if still no return of symptoms then I could stop the plaq. The next rheum said ..."NO such things as flares, you have an auto immune problem which needs to be managed"
Ive only them for just over a week not as bad now but legs keep twitching mainly when im tired I seem to remember being like this when I was first diagnosed and when I was on steroids it all settled down. I have started the 400mg plaq and hope that helps otherwise I will ask again if I can go back on steroids for a while.