Sjogren's

July 5, 2003

Why would you take steroids when you need cortisol???? You will get many

different diseases until you get cortisol.

Gracia

> It would seem I have primary sjogren's syndrome, with complications...they

> are currently trying to confirm the Dx.

July 5, 2003

I am glad to see at least they finally know what is going on. Finally the

treatment not the " who knows and shoulder shrug " ! Hopefully this is the

beginning of up!

Jamy

Re: Sjogren's

It would seem I have primary sjogren's syndrome, with complications...they

are currently trying to confirm the Dx. Which would be why I am so thin and

anemic, because I am not really digesting properly because my saliva glands

do not work properly and are swollen like balloons. My tear ducts are about

shot. My lymph nodes are in bad shape, and I have neurological problems. Of

course, its also been in my thyroid and lungs at some point as well. My

sinuses are now non-functional, confirmed by an MRI and MRA the other day. I

may have a condition called vasculitis, where white cells attack my blood

vessels and constrict them, cutting off the blood flow to essential

nerves-cauing stroke-like and MS like symptoms. I do not have a brain tumor

or lesion...three head scans later, I am clean, so it has to be nerve

involvement. I am out of remission so to speak....but hopefully headed back

to remission as soon as possible. I am better than I was a week ago. This

would be why I have not posted a lot. And while I had stroke-like symptoms

the other day, I am essentially OK now. The fatigue is overbearing. I upped

my armour a bit, thinking that was it...but the fatigue is part of the

autoimmune process. I started to swell up like I did when I was first dx.ed

hypothyroid, and this time they hope to catch it in action, so I had several

autoimmune antibodies run. In Sjogrens, the antibodies often do not show up

unless you have them taken during the worst part of a flare up. It is very

difficult to Dx. Now I have two docs who believe this is the cause of all my

misery over the years (as if getting my thyroid screwed up was not enough),

both of whom I respect...and it will be back to a rhuemy, opthamologist,

ENT, and who knows who else...possibly an oncologist to do a lymph node

biopsy to make sure that my lymph nodes have not turned non-hodgkin's from

repeated autoimmune attacks on them. Sjogren's is the only autoimmune

disease that can cause cancer, but it generally is not as deadly as Lupus or

MS can be in some people. However, I have a very severe form, so we shall

see. Its like sarcoidosis met lupus and had a baby. I am hanging in there

though. Stress and fibromyalgia my ass!

This means I will get steriods (yea!) and other meds for treatment.

http://www.clevelandclinic.org/arthritis/treat/facts/sjogren.htm

I kept asking them why I was hypothyroid...they are SOOOOOOOO stupid.

July 5, 2003

I can trace symptoms of this disease back to two years of age. It is the

reason for the low cortisol..rather than the other way around....my body has

used as much natural steriod trying to control the inflammation as possible.

The Sjogren;s have not seemed to attack the adrenals...at least not yet. But

yes, I could develop addison's...or any other autoimmune problem similar as

a result. Had I gone on cortisol or isocort, it is possible that right now I

would not have a dx for the disease that I have lived with all my life. It

may have masked some of the symptoms during this flare up, and I would be no

further than I ever have been. However, if I don't get on pred to control it

now, I could easily be disabled in a matter of years...or not...depends on

the disease progression, but I know it is getting worse.

Primary Sjorgren's is GENETIC. They traced it to a gene during the genome

mapping. It is caused by a gene that puts out a specific protein. The white

cells, after activated by a virus...can be at any age or with meno...attack

this protein nomatter where it shows up in your body. It is most prevalent

in the exocrine glands, such as tear ducts, sinuses, saliva and sweat

glands, lungs, gastointestinal secreting glands, and lymph nodes. In 10% of

cases (such as mine) it attacks the thyroid and blood vessels. In some

people it attacks the liver and kidneys. Cortisol is a steriod...many

addison's patients get cortisol, some pred, hydrocortisone, some others

....depending on which works best with the body. Its all the same

animal...corticol steroids.

They are currently working on a cure. Now that the gene and protein are

isolated, they are closer to a cure for Sjogrens than any other immune

disease...because of its genetic discovery and due to the ability to study

the exocrine glands they hhave found a vaccine that stops the disease

process in mice. Hopefully it will not be a million years until the FDA

approves it.

>

> Why would you take steroids when you need cortisol???? You will get many

> different diseases until you get cortisol.

> Gracia

>

July 5, 2003

autoimmune diseases are adrenal in origin. you will only improve when you

get cortisol, and then can take enough Armour. this is just what happens

to thyroid patients! They get every diagnosis but the right one. Have you

read Safe Uses of Cortisol?

Gracia---thunder storm coming

> I can trace symptoms of this disease back to two years of age. It is the

> reason for the low cortisol..rather than the other way around....my body

has

> used as much natural steriod trying to control the inflammation as

possible.

> The Sjogren;s have not seemed to attack the adrenals...at least not yet.

But

> yes, I could develop addison's...or any other autoimmune problem similar

as

> a result. Had I gone on cortisol or isocort, it is possible that right now

I

> would not have a dx for the disease that I have lived with all my life. It

> may have masked some of the symptoms during this flare up, and I would be

no

> further than I ever have been. However, if I don't get on pred to control

it

> now, I could easily be disabled in a matter of years...or not...depends on

> the disease progression, but I know it is getting worse.

>

> Primary Sjorgren's is GENETIC. They traced it to a gene during the genome

> mapping. It is caused by a gene that puts out a specific protein. The

white

> cells, after activated by a virus...can be at any age or with

meno...attack

> this protein nomatter where it shows up in your body. It is most prevalent

> in the exocrine glands, such as tear ducts, sinuses, saliva and sweat

> glands, lungs, gastointestinal secreting glands, and lymph nodes. In 10%

of

> cases (such as mine) it attacks the thyroid and blood vessels. In some

> people it attacks the liver and kidneys. Cortisol is a steriod...many

> addison's patients get cortisol, some pred, hydrocortisone, some others

> ...depending on which works best with the body. Its all the same

> animal...corticol steroids.

>

> They are currently working on a cure. Now that the gene and protein are

> isolated, they are closer to a cure for Sjogrens than any other immune

> disease...because of its genetic discovery and due to the ability to study

> the exocrine glands they hhave found a vaccine that stops the disease

> process in mice. Hopefully it will not be a million years until the FDA

> approves it.

>

> >

> > Why would you take steroids when you need cortisol???? You will get

many

> > different diseases until you get cortisol.

> > Gracia

> >

>

July 5, 2003

, I am so sorry about your recent findings.I have a friend who

also has Sjogren's. If you interested I could ask her if she would

be interested in chatting with you. She has had it for a while. I

know she also belongs to a list but not sure if it is yahoo or not.

If interested let me know. I am sure it would be nice to get support

from those who know.....she too is hypo!!!! Hope you are feeling

better soon.

:-)

July 5, 2003

,

I wish the best for you. Hang in there!

Louise

July 15, 2003

Hi folks...

Well, the diagnosis is official. Its Primary Sjorgren's. Had some physical

testing today and I meet the criteria. The rhuemy was super (another one who

didn't bat an eye when I told him I was off synth and on Armour) and very

thorough...the opthamologist office was like a cattle call...don't see me

going back there. I will start the meds tomorrow to reduce the inflammation.

I cannot even have sex right now due to inflammation of the girly parts (my

right bartholin gland kicked out over the weekend...it was only a matter of

time....Rhuemy told me to have the Dr Ruth get me some cream or gel with

preogesterone and a little estrogen in it to get some extra lubrication so

this doesn't happen again). I am trying epsom salt baths to get the gland to

open so it will drain properly (sorry so gross, but you can take it) so that

I don't have to go to a gyno and have it lanced. YOWCH! Mr Not So Stubbon is

really cool about it, thank goodness...he is being a real sport. So, even

though I would like to have sex, there is this little part of me thats glad

to see he can be really cool about such things.

So, he says this is why I am hypothyroid, and the weight loss (I am not

digesting fat...it is just going right through...) hopefully on meds I will

gain some weight!!!!

July 15, 2003

Sorry to hear about the dx but glad you have the dx.