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Sjogren's Syndrome Support

Lip biopsy Monday


#1

Hi
An ENT will perform a lip biopsy - I’m hoping it goes easy. I’m worried about gaining more weight due these meds the Rheum has me on and lack of energy to exercise. I’m on a few meds - a couple are Hydroxychloroquine & Prednisone.

I met with a HEM/ONC specialist who ran tests and referred me a Rheumatologist who feels strongly about Sjogrens and Opthamalogist is about on board as well.

I’m reading & learning.


#2

I am so glad I didn't need to have the lip biopsy. Many say they have had numbness for months and some say it never goes away. A few people had horrible bleeding after leaving the doctor's office. I would suggest having someone along with you that day. Take care and I hope you feel some relief soon.


#3

I have been on Prednisone a year this past April. I am on a low dose now, but still hard not gaining more weight. You have to accept the weight gain (the bad) and know that it is helping (the good).


#4

I had a lip Biopsy bc my blood work never came back positive for sjogrens. In fact I had to have 2 lip biopsy & it’s not pleasant but they numb your lip in the doc office.The nerves in your lip are sensitive therefore you will feel the numbness/ sensation for months after even a few years after. But it’s all worth finding out what’s wrong with you :slight_smile:
You should take someone with you that day.
Good luck!


#5

Hallo Pink,

Just to let you know that when I had my lip biopsy a couple of years ago, during the op, didn't feel a thing. You do know that the wound is healing when the stitches get tighter. The stitches used are self dissolving and in fact you can help yourself in removing them when they start to come loose. Weight gain can be a problem until the meds kick in and you help yourself with doing as much as you possibly can, even if you have no energy. Having support from family and friends is to me, the most important thing.
Reading your message it looks as if you are getting help with Sjogrens from various specialists. What I have learned so far is to speak your mind and if you think you're not being taken seriously, let that person know how you feel. As you say, you are reading and learning more and more. Keep reading - there is so much important information out there. Good luck with your biopsy. All the best, Gina


#6

I had the lip biopsy and it confirmed that I do have SS. It was not a walk in the park that's for sure and the numbness did last for months, but I'm still glad I did it. It confirmed what I had thought for several years.

I don't take Hydroxychloroquine or Prednisone so I can't comment on those.

Good luck!


#7

Take care of yourself and let us know how you are doing.


#8

Hi Pink, I had a lip biopsy done by an oral surgeon. He took 9 pieces out and then stitched me up. I had to go back to have stitches removed but some did fall out. The procedure is not painful while numb. Afterward some minor pain and inconvience while eating. Just so you are not shocked like I was the next day your lip and face are pretty swollen and bruised. Mine was pos. and I was just glad to get a confirmation on something. Wishing you well!


#9

Hi all,
Thanks so much for sharing your experiences, giving advice and for providing your well wishes. My lip biopsy has rescheduled for a couple of weeks however l have several appointments in between. It’s overwhelming a bit, but great to have the Rheumatologist helping me to navigate these other specialists.


#10

I'm so grateful my doc went with the Sjo Test instead of the biopsy. My other blood work always came back negative so this was the first thing that showed it. I am a total weenie when it comes to things like a lip biopsy. LOL


#11

Glad that you finally have some answers.


#12

What is the lip biopsy do