Dr. Birnbaum

[JenJen]

Terri--

For me, the Plaquenil just seemed like it was slowing down whatever AI processes were going on.  I've been pretty comfortable overall for the last 6 years and I just thought maybe the Plaq. was helping things not get worse.  I've read here, though, that Plaquenil may not be enough to halt progression of neurological/vascular issues and the bigger gun medications may need to be tried.  I've never been on Prednisone or Imuran or anything like that, but maybe that is the direction my future will take.

I could be wrong, but I attributed my eyes and mouth not getting drier and fatigue and general aches and pains not getting worse because of the Plaq.  I've also read from others that they didn't notice if Plaquenil was making a difference until they went OFF of it. 

[yodeb]

Hello all!

Just wanted to send an update regarding my contact with Dr. Birnbaum.

Dr. Birnbaum just called me and said he needs me to arrange a lip biopsy before he will determine that I have Sjogren's. 
The shirmer's test alone without positive blood results are not enough.

Have a Happy 4th of July weekend!

deb

[Chickpea]

Hi Deb

It's good that he called you and is taking your case seriously.  How do you feel about having a lip biopsy?

Hope you have a fun weekend.

Take care - Chickpea

[JenJen]

Hey all, Happy almost 4th of July!

I received an email reply back from Dr. Birnbaum two days after I sent mine to him (pretty good... )  He indicated it would be best if I traveled and saw him in person, so now I guess I start the process to see if I can afford it.    I suppose we can't really put a price on our health, though.

[yodeb]

Chickpea,

Thank you for your note, that is a good way to think of his call. Your words helped me! I definitely want to get the lip biopsy, but a bit nervous due to some things I have read.  Any info regarding what to expect would be great and what type of doctor does this??
Thank you again!
deb

JenJen,

I am glad you heard back and I hope you can make the trip.  I look forward to hearing how everything works out for you. 
All the best,
deb

[Chickpea]

Hi Deb

Glad I was able to help even a little.  I haven't had a lip biopsy - they diagnose SjS here in the UK without them most of the time - but many others here have.  I'm sure someone will be along soon to tell you all about it.  Alternatively you could put 'lip biopsy' into the search box and see what comes up.  From what I've read it's best to find someone who has a lot of experience doing them - so don't be afraid to question the doctor about his/her track record!

Take care - Chickpea

[yodeb]

Chickpea,

Thank you again for you advice.  I am going to call my doctor on Monday.

deb

[anita]

Hi Deb,

I have had the lip biopsy...at Dr. Birnbaum's request (if you remember my ealier post, he's my doctor).  John's Hopkins has a dermatologist perform them, but I have heard of ENT's doing them as well.  The doctor that did mine had done many...but be sure to ask.  I didn't have the greatest experience regardless of a top facility and doctor doing the procedure.  It left a hard knot (about the size of a BB) in my lip and it's also numb.  However, I wouldn't necessarily blame the doctor.  My biopsy results showed so much scarring of the gland that they listed it as "end stage" Sjogren's (I didn't know there were stages).  Therefore, my lip would have probably healed that way regardless of who did it.  Be sure to ask about the pathology.  Hopkins uses the Greenspan grading scale...which is highly recommended.  I don't know if it's standard everywhere now.  It wouldn't hurt to ask about the experience (and scale used) of the pathologist.

Good luck,
Anita

[yodeb]

Anita,

Thank you so much for your reply.  I don't have severe dry mouth, do you know if that is a factor in whether to get the biopsy or not?
If you don't mind me asking, were you hesitant in getting the lip biopsy?
A little nervous,
deb

[anita]

Deb,

I have a moderately dry mouth, and like you had a very positive schirmmer test but negative blood work.  The lip biopsy was to best way to finally determine if I had SJS.  The only 'factor' in whether to get the test is whether the doctor thinks it's SJS and wants to pursue treatment.  Dr. Birnbaum is about the most thorough doctor I've ever met and wouldn't ask for it, unless he felt, 1) it was warranted, and 2) necessary for a diagnosis.  He would always use a noninvasive test if the option is available....he never just orders tests for the sake of ordering tests (like some doctors).

Honestly, I wasn't nervous.  But please keep in mind that I have been through so many invasive procedures, that it would be unfair for me to say others shouldn't nervous.  I've had 20+ surgeries (including open heart), and countless numbers of invasive "tests".  I had not researched the lip biopsy before having it done so I didn't know what to expect.  It only took 20 minutes or so (actually procedure time) and wasn't overly uncomfortable.  The numbness is annoying, as is the lump it left, but nothing I haven't gotten use to.

Hope this is helpful,

Anita

[yodeb]

Anita,

You have been very helpful and I appreciate your replies.  I am going to make some calls today, I see my doctor on Wed. so I want to have my "homework" done. I will let you know what transpires next...
Thank you again,

deb

[irish]

The plaquenil is an anti-inflammatory drug that is used to treat malaria in much, much higher dosages. Doctors discovered that when using the drug for the malaria the people with aches and pains of arthritis and other autoimmune issues improved. Doctors feel that the anti-inflammatory action of the drug tones down the autoimmune attack on the body.

It has shown to be true by all the people who find much relief from the drug. It is now the first line drug in treatment of sjogrens and does take quite a while to kick in. Doctors feel that it should be given with prednisone so that the patient is made more comfortable while waiting for the drug to kick in. After a certain number of months(different for every doc and patient I would think) the doc starts to taper dose the prednisone to see if there is relief from the plaquenil. It none is noted the prednisone is bumped back up or left at a dosage that is workable for the patient. Generally can get the prednisone tapered way down or patient totally off the drug.

Be aware that while the literature states that eye problems are caused by the drug there are many eye docs who have never seen any eye problems in patients on the med. It should be noted that the higher doses used in malaria are much more likely to cause the eye issues. But---it is very good that most eye docs want to do a baseline eye exam prior to starting the plaquenil and then every 6 months or so. Irish