Second lip Biopsy next friday

[baddabingtim]

Just came from ENT - My 1st lip biopsy was inconclusive - so I got another one next friday  - he was ready to do it today - but I said I am traveling next week and don't want to freak out anyone

I ask him straight up about the whole thing - he says since I have dry eyes and dry mouth - he cannot imagine what else it could be

[Sjenny]

Tim:

Is the doctor willing to treat the symptoms even without definitive proof?  It's none of my business, but why put yourself through another lip biopsy?  Of course, I've been too chicken to even have the first biopsy done.  But the docs have been willing to put me on Restasis and Pilocarpine without it and quite frankly, there's not much else they have in their limited medical arsenal for Sjogren's other than Plaquenil (which is given for joint pain).  So, I reckon, why have them rip out irreplaceable glands just so they can write SJOGREN'S on my folder instead of POSSIBLE SJOGREN's.

Sue

[genko_b]

Actually, Plaquenil does a great deal more than just help the joints. It is used to slow down the disease process itself, while Restasis and Pilocarpine are for symptomatic relief.

If you are able to tolerate Plaquenil and it works for you, it can lessen the fatigue that comes with Sjogren's, as well as help the joint and muscle pain, and also may help support your eyes and salivary glands and prevent further deterioration. Many of us feel way better on it, and our bloodwork shows its effect as well. There are several other DMARDS (disease-modifying drugs) that can be used in addition to or instead of Plaquenil as well, depending on how aggressive your doctor is willing to be in treating it.

I agree though that it doesn't make much sense to have another lip biopsy done, unless you feel you are really deteriorating, in which case a second one might show something. I was diagnosed from bloodwork alone, no lip biopsy.

Genko

[Sjenny]

Genko:

Probably different researchers and doctors disagree about treatments.  I asked Dr. Frederick Vivino from the Sjorgren's Clinic is Philly, about Plaquenil and he told me that it won't help with the dryness symptoms.  I asked him if it slowed the progression of Sjogrens and he indicated to me that nobody really knows, it would take a 15 year clinical trial to find out.  He also indicated to me that none of the DMARD's were effective with dryness symptoms with the possible exception of Rituxan which is being tested now.  All in all, it was pretty discouraging news to me.

Sue

[baddabingtim]

Idid not mind the first one and I really want to know. To rule out some type of anxiety

[genko_b]

Then you should definitely have the second biopsy.

Genko

[Patze]

Hi Tim,

Good luck with the lip biopsy!  The rheumy wants me to have another one done, and my answer to him was one I can't print here, but you get the idea (mine was also inconclusive).

Genko makes a good point, will your doctor treat your symptoms without a positive result?

Take care -

Patze

[baddabingtim]

Its better for me to be sure than not - I have battled with stress that has caused other issues - so for me - who knows - maybe anxiety and stress are making my mouth dry - since its only been dry a few months and my eyes were dry for 30 yrs

[lady nova]

Hey Tim,


     While I respect your choice, I will tell you what my rheumatologist said to me. He said that it isn't worth doing the lip biopsy because it isn't always conclusive. So for me, he is treating me as if I definitely have Sjogren's Syndrome. He also told me that you can have permanent lip numbness. Now, from personal experience, I had a jaw surgery years ago, and I have permanent numbness in my face, which isn't always fun. When things brush against it, it feels weird, and trust me, when you have these "fun" diseases in your life, it makes your insurance company go after you like a Salem Witch hunt. So, I say if he wants to treat the symptoms he feels that you have the disease. The only other thing I can think that would cause dry eye maybe is a thyroid condition perhaps. I wish you all the best.


Lady Nova

[baddabingtim]

So I have dry eyes and dry mouth and the only conclusion is sjorgrens ?. I am going to go through with it - I already had it done once about 5 weeks ago and my lips is fine -

I have had stress in the past that has caused strange health issues - I would rather figure it out than just assume something.

So everyone has there own choice -

I am totally healthy other than dry eyes - which are not too bad - I maybe put drops in every few days - sometimes nothing - like yesterday and today.  The dry mouth is dry, but its not like my tonque is sticking to my throat and when I wake up my mouth is fine

[pudmott]

Goodluck Tim. If it gives you peace of mind it is worth it.

Pud

[Scottietottie]

Hi Tim 

You're right. There are other causes for dry mouth and dry eyes. You may not have Sjogren's. I hope you don't. Good luck with the second biopsy.

If it turns out you do have SjS then I hope you are one of the many people who never develop anything more than the dry eyes and mouth, irritating as they may be.

Yake care - Scottie 

[Pooh]

Hi Tim,
I hope you find the answer to your problems with the next biopsy.  I know how uncomfortable the dry eyes and dry mouth are.  I do however, pray you don't have Sjogren's.  I pray it is something easily fixed with medication or none at all.

Please let us know how you make out, and if it isn't Sjogren's it won't matter to us.  You have been a great addition to our family and we will still expect your posts.

Pooh

[baddabingtim]

thanks - sitting at the charlotte, NC airport - waiting for a flight to happening Jackson, Missisippi - Oh Boy can hardly wait

I am a boston guy

[lesleyjoy]

Hi Tim, all I can say is it's your choice but be prepared for the second biopsy to be 'inconclusive' 

All the best,
Lesley (New Zealand)