Hi. My name is Gena and I just joined this site today - I had lip biopsy in June and blood work - results was rheumatoid arthritis and Sjogren’s – I have appointment with specialist - I live in Bradenton Florida - been slow process- my primary referred me to Dr. small- waiting to get in- I have dry eyes and mouth- I’ve had very painful sores in my mouth - inside my lower lip and sore on my tongue since Novemberand extreme fatigue which no one seems to get- I’m taking B12 and B complex- use bootees products- suck hard candy - helps only bit - and my lower left side of my lip is numb from biopsy ( been 2months) plus surgery site has small raised sore sight - very slow healing- primary Dr. Just put me on antibotic to see if that will help- I’m just reading everything I can to help myself understand these diseases- hope this site helps.
Gosh, I am in Orlando and hope I don’t have to drive to Bradenton. Thanks for the info.
Hope that your appointment soon comes round and that you get some help. It's probably no consolation, but at least you have a diagnosis and are in the system. It's good that you're reading as much as you can, as going prepared to see doctors is the best way to make informed choices and will hopefully give you confidence to be your own advocate. At least we understand the fatigue here, sending you a hug!
Thanks Jules-I get bit discouraged - the surgery site continues to be sore and lump is still in lower lip at the biopsy site - and my lip is numb- I’ve read where couple of people had this happen - I was hoping antibotic would help but hasn’t done much- Dr. small in Bradenton I’m going to takes forever to get in but I do have appointment–eye gel helps my eyes more than drops - I try to stay positive but fatigue is horrible as I’ve always been very actitive in my church and mobile park- but have to pick and choose - I did start stretch class that seems to help joint pain- thanks for your response- nice to hear from others- I’m searching for things people have tried - I take triazolam for sleep - my primary Dr. Had put me on ambien- that worked for few years - then changed to triazolam–
Sorry you are having such a miserable time with your sore mouth. After lots of various treatments I find the only gel that helps me with the sores is baby bonjela. Not sure you have that available. It does hurt when it goes on but it heals really quickly and must be safe as its for babies! Once you have the sores under control you really need to focus on keeping the mouth moist or it will come back. For that I use a mouth spray called A.S Saliva Orthana which does not contain alcohol which some mouth sprays do. Whilst you have a sore mouth you can use a water flosser to clean your teeth and mouth and when its better use a soft brush and biotene toothpaste and mouthwash. Again they do not contain anything which will dry out your mouth.
Dry mouth is horrible but I have found that once you find the right products for you it can be kept under control. I had the same awful symtoms as you at first and it was my dentist who helped to find the right products and regime for me rather than the doctors.
Hope this helps
Thanks so much--I finally got into Dr. Small--I'm on cevimeline 3 times day and plaquenil--the dry mouth is little better--but not sores--will try your suggestions--thanks
I found Plaquenil went the furthest towards fighting back the fatigue and giving me something of a life back. Just know that it takes several months to build up in the system.....Its not an overnight fix. I hope it works for you.
I was getting sores on the outside corner of the mouth for a while but biotin and b12 fixed that. The doc put me on them but I had read that we tend to run low on them and on D3. (don't take anything without talking to doc. even supplements can interact with other meds). Please keep us posted on how you are doing. Sending gentle hugs.
I live in Lakeland, Florida and I have been trying to find a good rheumatologist. The first one here in Lakeland pretty much dismissed me when I turned out to be seronegative. How long did it take to get in with Dr. Small? Should I demand a lip biopsy from my ENT before I go see Dr. Small if I can get in with him? Thanks in advance.
This thread is about a year and a half old, so I’m not sure that the member who saw Dr. Small is still active.
I use to go to Doctor Small and he is good and he will do a Biopsy to see if you got sjogren. Because he sent me to a ENT, and it’s came back positive.