I had my visit with the rheumatologist today. She gave me the following tests:

HIV AB, HIV 1/2, EIA, with reflexes
Complement Component C4C
Complement Component C3C
Immunoglobulins A/E/G/M
Vitamin A
Angiotensin Converting Enzymes (ACE)

She said that before considering the lip biopsy, let us see the results of the tests first. She looked briefly inside my mouth, particularly under the tongue and said that mouth is dry. It used to that my mouth is not dry. I only noticed it recently. Not only my mouth now is dry but I think even my nostrils and throat. Since the neurologist talked about the option of seeing a psychiatrist, I am wondering if my nostrils and throat dryness may have been "created" by my mind But, somehow, the comment of the rheumy about my dry mouth assured me that its not. I am pretty sure, though, my bloodworks are negative, there is something happening in my body - it shows something in my lungs. Something is causing the progression of the nodules. How I wish my doctors could find it very soon. I am tired and frustrated of the never-ending trips to doctors, blood extractions, procedures. But, this will all pass, sooner or later.

en bloc, is it really difficult to swallow food when your throat is dry? I notice that the bread, even when well chewed, gets somehow stuck in my throat (not inside the throat but I think its right in the opening, where the tongue ends). I need to swallow several times and drink before it gets down.

The doctor recommended to use Biotin oral care.

I think her plan is reasonable to check labs before lip biopsy. But don't be surprised if they come back negative.

Dry throat definitely cause problems swallowing. Biotene (biotin is hair growth products) may help the mouth but I didn't have much luck in the throat or sinuses. I sip water when I eat to help swallowing. I have had many times where things get stuck, so be careful...especially with breads.

Did you set up a follow up appt to discuss lab results and a next step in the plan if they are negative...ie, lip biopsy? hopefully it's not too far off, as i know you want some answers. Isn't pulmonary visit coming up soon?

My follow up consultation with the rheumatologist will be August 16. Its the earliest available slot. I requested to be on wait list in case somebody cancel schedule. Pulmo will be in July 16.

Yes the bread...I love peanut butter and it makes it more sticky in my throat.
Thank you for the correction of the Biotene. Lol.

Do you think the steroids in symbicort contribute to this mouth, nasal and throat dryness? Did you treat your SS with prednisone or other meds or you are treating only the symptoms? Good for you because you only developed asthma. While I have this fibronodular densities.

Its probably just a coincidence after taking symbicort the hypersensitivity of my skin has become more intense. My whole back area has joined the "party " of being so prickly.

I did not have 'increased' dry throat or sinuses from Symbicort. I had problems to begin with and still had the same problems after I started using it.

I would understand maybe some throat irritation, but not anything related to the sinuses. You really need to determine if you had this dryness before you started the Symbicort.

Over the years, I have tried Prednisone (both oral and IV), Cellcept, IVIG, and currently still take Plaquenil (first line treatment for AI disease). That said it is still about treating symtpoms...like for my gastroparesis, GERD, and heart related problems from the SjS.

Thank you en bloc for always replying to my posts. Your insights are important to me.

I was on plaquenil for a few months before the neurological symptoms started. It was not the first line for the osteoarthritis but I could not take any form of NSAIDs or I buprofen. I could not swear that i have a reaction to it but since it was the new medicine I was taking then I stopped taking it.

What occurred...that made you stop it?

Thank you for your interest in asking....

I developed severe itching all over my body. I would not swear that it was the Plaquenil that caused the itching since I was already taking it for maybe a month or two. However, since it was the only new medicine I was taking then, and there was no unusual food intake, I called the rheumy clinic and I was told to stop it. I was given several anti-histamine, but to no avail. Just two weeks after the incident, the itch became pain. Its the same pain I am experiencing in my skin now.

In case, the rheumy would get me back on Plaquenil, I dont know what to do...

I got copies of my bloodworks, you are right - its all within normal levels, even the ACE. My number for ACE is 32 (with normal range of 12 - 68).

Was your ACE, then, normal too? I wonder why ACE, being the test to determine inflammation, would show normal to some with Sjorgren's? What is so mysterious about this condition?

MrsD probably knows more about the ACE test then I do. I think it's more to diagnose Sacroidosis. It don't think it gauges inflammations in general. Mine test was normal.

If your rheumatologist thinks that Sjogren's is a strong possibility, then you should have the lip biopsy.

Back to the Plaquenil:
It is possible that within the Lupus community itself, this drug is "commonly" used or at least tried. Same with some of the other autoimmune conditions.
Also recently the new biologic agents for all the inflammatory type issues, where Plaquenil was previously used, are eclipsing the older agent.

Here is something interesting. I have this redness on my arms, which resulted from a severe reaction to the water on vacation, which blistered me. (a professor at WSU near me thought it was a reaction to an algae in the water...I only get it when the water turns warmer from being really cold. Otherwise I can go in the water and have sun and have no blisters or redness).

So I found this disorder recently:
http://dermnetnz.org/immune/rem.html

Guess what the ONLY treatment is? Plaquenil! In fact this condition is not well understood, and is not exactly a rash, as we know it. It blanches, and goes away when I lie down, but when I stand up or sit up gravity makes it red again. It is a vascular thing therefore in the deeper skin. It is a little less acute after about 4 yrs now, but according to what I am finding about it, is related to Lupus...but is "not Lupus"...in other words not understood. (Lupus tests negative, and I've had two Lupus investigations in the past which were negative both times).

I've hesitated to go to the dermatologist as my internist suggested, because this redness/rash does not spread, does not weep (you cannot feel it when you put your hand over it), it does not hurt, burn, itch, weep, bleed, or flake. In fact my skin is soft and normal except for the redness, which blanches on pressure. At this point it is not doing anything. Why expose myself to some potentially toxic treatment?

In fact I've been doing high dose Biotin for over a month now, and it seems to be fading the redness some. I am hopeful I can heal it this way.

Back to ACE.... I believe it is important because of your lung issues, Idiopathic, to have sarcoid ruled out. Sarcoid is tissue which is inflamed and deposited in organs and the CNS and needs to
be ruled out for your PN too. (neuro Sarcoid). So if you are low in ACE, then that is one potential you won't have to follow up on at this point.