Author Topic: Autoimmune Epithelitis  (Read 17448 times)

rnathans

  • Sr. Member
  • ****
  • Posts: 473
Re: Autoimmune Epithelitis
« Reply #30 on: December 28, 2010, 01:39:36 PM »
Anita,

I got aseptic meningitis years ago from IVIG as well and thought I would never go back on it. Years later, this past September, I tried it again with a much lower dose and a different brand. Got headache but not as bad and now manageable with premeds and a medrol dose pack after my one day a month infusion. The good news is that I am tolerating it and seeing improvement in my near symptoms.

I have spoken to neurologists who say that no one really knows if such large doses of IVIG are always needed and in my case I am seeing benefit at a lower dose.

I also take IV reclast yearly . Recently had a bone density test after 2 years and there was actually some improvement.
Ruth

anita

  • Hero Member
  • *****
  • Posts: 2435
Re: Autoimmune Epithelitis
« Reply #31 on: December 28, 2010, 06:49:56 PM »
I don't think my dose was too big (50 grams monthly---but broken into two day doses).  I can't remember what my loading dose was when I had the meningitis (but I'm going to go hunt it down now that you got me thinking).

I actually (last two years) got reduced doses every 10 days (two days in a row)...because I had to go sooooo slow to avoid reactions.  Only 60 ml/hour top speed...lol  I also did pre-meds.

I don't think my neurologist would go for it again...700+ white cell count is a lot more than a typical "reaction".

I need to do another bone density...it's been a couple years since the last one and I'm curious if this is helping.  Maybe I'll forget about this reaction by this time next year...lol

Inga,

I think sometimes I just don't fit into any category...and baffle those (docs) trying to put me in one.  I keep them guessing...and hopefully learning.

Also, what is your IVIG dose?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

anita

  • Hero Member
  • *****
  • Posts: 2435
Re: Autoimmune Epithelitis
« Reply #32 on: December 28, 2010, 07:48:00 PM »
Inga,

I have to go back to the epithelium once again.

Does the brain contain epithelial tissue?  Would an MRI be able to pick up epithelitis?

My EEG showed bilateral temporal lobe dysfunction and I have significant cognitive dysfunction (just now confirmed with neuro-psych testing).  I'm wondering if epithelitis could be the causative action.  Also wonder what other neuro problems can be explained from within this brain of mine...like autonomic neuropathy.  Any ideas if AN can be defined/pinpointed from something in the brain? 
« Last Edit: December 28, 2010, 07:49:57 PM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

inga

  • Guest
Re: Autoimmune Epithelitis
« Reply #33 on: December 29, 2010, 07:27:03 AM »
T cells are related to bone marrow and the thymus gland.  Only 2% are supposed to emerge and circulate.  I wonder if they are working on targeting these cells....T helper cells differentiate to several other kinds of cells....is it possible that one or all of the T cell derivatives causes this syndrome.  Interestingly, most of us with the high CD4 counts have bone issues, kidney issues related to dRTA, and also neuro problems.  It is interesting your CD4/CD8 ratio is high but ANA is negative....mine is high but ANA +.  I intend to ask the neuro when I see him, about the CD4+/CD8 ratio.  I also have a noisy, enlarged nasolacrimal duct which I hope they may be able to biopsy....I am wondering if it is inflammed, or has atypical tissue.

http://en.wikipedia.org/wiki/T_cell

anita

  • Hero Member
  • *****
  • Posts: 2435
Re: Autoimmune Epithelitis
« Reply #34 on: December 29, 2010, 02:19:17 PM »
I think I'll ask him to run another CD4/CD8 and ANA (it's been a while since either has been tested).

I do have to wonder how some meds effect these labs.   There really isn't a good reference for what labs are effected...and by what meds. 

I think they have narrowed it down to the B cells (which I guess is a derivative of the T cells...and NK cells).  Odd that an old lab of mine noted I had undetectable NK cell activity.

Any thoughts about whether epithelial tissue is in the brain?  Or whether actual epithelitis can occur in the brain and possibly cause neuro dysfunction (AN or otherswise)?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

inga

  • Guest
Re: Autoimmune Epithelitis
« Reply #35 on: December 29, 2010, 02:39:02 PM »
I have also had a test and had low or undetectable NK cells.

As far as I know, there is no epithelial tissue in brain.  It is associated with 'lining' of organs which contain tubes or hollow spaces, or areas such as skin, mucous membranes, gut etc.

It makes sense that nerves dying in the tissue cause a degradation of the tissue itself.

anita

  • Hero Member
  • *****
  • Posts: 2435
Re: Autoimmune Epithelitis
« Reply #36 on: December 29, 2010, 02:50:15 PM »
Hmmm.  I was hoping to connect more (brain, neuro, cognitive, etc) to the autoimmune epithelitis.  I just don't think there is 2, 3 or more different things wrong...it's ONE thing that is causing the whole ball of wax.  So it has to be something that can affect not only the exocrine system, but the widespread organ involvement and widespread neuro (to include changes/damage in the brain).

The search...and research, continues.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

rnathans

  • Sr. Member
  • ****
  • Posts: 473
Re: Autoimmune Epithelitis
« Reply #37 on: December 29, 2010, 07:16:06 PM »
Anita,
My IVIG dose is 25 gms one day a month so you were getting twice as much as me per month.
Ruth

anita

  • Hero Member
  • *****
  • Posts: 2435
Re: Autoimmune Epithelitis
« Reply #38 on: December 29, 2010, 08:12:35 PM »
Thanks Ruth.

Inga, how much do you get (IVIG)? 
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

inga

  • Guest
Re: Autoimmune Epithelitis
« Reply #39 on: December 30, 2010, 01:10:39 PM »
Hi,

Anita, I get 30 grams monthly.

Also, have you checked out Autoimmune Autonomic Neuropathy....this is one of my diagnoses?  It is possible this accounts for some Sicca.

inga

  • Guest
Re: Autoimmune Epithelitis
« Reply #40 on: December 30, 2010, 02:15:27 PM »
Anita, I was doing some research on alpha synucleins, and I just happened upon this info.....CD4+ cells can mount a neuroprotective response in neurodegnerative disease.  So essentially, that CD4+ count that is elevated, may not be a bad thing.  Big hmmmm.  IVIG would NOT hamper that response...it is the only treatment that wouldn't, since IVIG is immunomodulary.  I am going to pass on any immunosuppression for now, until they identify exactly what my disease process is.


anita

  • Hero Member
  • *****
  • Posts: 2435
Re: Autoimmune Epithelitis
« Reply #41 on: December 31, 2010, 05:06:32 AM »
Interesting about the IVIG.  I guess I was getting much more because I also had a IgG subclass deficiency.  I wonder about the incident of recurring A. meningitis...especially if I were to be at a more (neuro) therapeutic level.  Not sure Birnbaum, would be game (not sure I am either...needs more thought).  The subclass def. doesn't even seem to be an issue any more (not sure why).

Also interesting is the CD4+ response.  I agree, not a bad thing after all.  Certainly another confirmation of neurodegenerative disease (wouldn't need to respond if not present). 

I too will likely stay were I am for now.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

inga

  • Guest
Re: Autoimmune Epithelitis
« Reply #42 on: December 31, 2010, 10:42:14 AM »
I wonder if the neurodegenerative issue is at the base of it.  Research Autoimmune Autonomic Neuropathy and Pure Autonomic Failure.  I think I am in one or the other, as far as a grouping.  Both would include Sicca.  AAN would possibly result in the +ANA.  On the other hand, there could be two disease processes, but like you Anita, I feel that is unlikely.

Baklavas

  • Guest
Re: Autoimmune Epithelitis
« Reply #43 on: January 26, 2011, 10:26:56 AM »
Denervation can lead to impaired salivary gland structure -as can be seen in a lip biopsy, such as loss of acinar cells..
but, to explain lymphocyte infiltration loci when found  > 2 according Tarpley score,
one would pronounce that denervation is the result - not the first chronological causal event.
Otherwise put, I am unaware of denervation - nerve degeneration     per se    lead to cell infilitration.

However: in SS, not only infiltration and destruction occurs but also apoptosis of gland cells. A(t lest one) reason for the established apoptosis could stand in the loss of excitations from nerves due to their degeneration (my devise). From this standpoint, the denervation (the AAN in whole) could further contribute m- but as it is caused already by the prim or sec SS.

Kindly indicate any flaw as you find it.