Author Topic: Stages of Sjogren's?  (Read 15496 times)

KarenR

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Stages of Sjogren's?
« on: April 21, 2012, 12:17:41 AM »
Hi everyone. I have been perusing older posts lately and have seen a couple of references to stages of Sjogren's and even mention of late stage Sjogren's. Are there actual stages established with Sjogren's as there are for some cancers (for example, stages 1-4, or end stage disease)? The information I've read about Sjogren's seems to be pretty vague as far as what to expect. It seems to me that the medical people are more in the "treat the symptoms" mode and less in the "proactive" mode.

I just started reading The Sjogren's Book and am thinking I need to order one for my rheumatologist, the one who told me in 13 years of practice she's only had one patient who complained of brain fog or cognitive problems and it turned out to be a medication issue that went away when she changed to a different medication. Sometimes I think I'm doing more research than the professionals are.

anita

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Re: Stages of Sjogren's?
« Reply #1 on: April 21, 2012, 03:42:16 AM »
I have never read about official 'stages'.  However, my lip biopsy results read as follows: "...glands exhibit almost complete loss of acinar structures replacing with fibrosis and subsequent metoplastic changes.  The loss of acini and degree of fibrosis are consistent with Sjogren's at end stage"   That's when I, too, questioned stages.  I still have no answer other than my disease is very progressed.

Sorry, I don't know the answer...and probably just muddled things up for you even more.
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

DragonflyC

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Re: Stages of Sjogren's?
« Reply #2 on: April 21, 2012, 07:40:54 AM »
I would guess that "end stage" is when the glands are basically destroyed, but not everyone's disease progresses that far and the timeline is different for everyone. 

Sjogren's, like most autoimmune diseases, is really unpredictable. Some people have a very slow progressing disease that's quite manageable, some have a disease that progresses in fits and starts, and some develop a variety of symptoms quickly. It's also possible to shift within those categories.

rnathans

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Re: Stages of Sjogren's?
« Reply #3 on: April 21, 2012, 09:24:28 AM »
And just to further complicate things my eyes and salivary glands are in much better shape than my nervous system. Just staging from my lip biopsy would not adequately reflect my deterioration over time.

genko_b

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Re: Stages of Sjogren's?
« Reply #4 on: April 21, 2012, 10:13:03 AM »
I've never seen a staging scale for Sjogren's, and my rheumatologist has never used "stage" in talking about the progression of my disease. I have not been nearly as affected by the lowered saliva production, for example, than by the neurological effects of the disease, similar to rnathans, so a scale based on salivary gland function wouldn't cover my situation.

Dragonfly and Anita have pretty well nailed my understanding of staging and Sjogren's.

Genko


genko_b

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Re: Stages of Sjogren's?
« Reply #5 on: April 21, 2012, 10:17:40 AM »
Never say never. I just found this on the internet:

http://www.ehow.com/about_5501450_stages-sjogrens-syndrome.html

Don't know anything more about it, for example, who developed this staging system.

Genko

warmwaters

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Re: Stages of Sjogren's?
« Reply #6 on: April 21, 2012, 11:35:29 AM »
The info in that link seems a little funky. For example, it mentions that there are surgeries that can be used in the treatment of Sjogren's.  I don't know of any surgeries - does anyone else?  I can think of insertion of eyeplugs, but I wouldn't call that a surgery.

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ohiolady

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Re: Stages of Sjogren's?
« Reply #7 on: April 21, 2012, 12:29:22 PM »
Karen,

It is frustrating because I don't think Sjogrens is very predictable.  In my own case, I have neurological (gastroparesis) as well as dryness issues.  In the beginning, the dryness was almost unbearable and I was weak and fatigue was off the charts.  Today, my dryness is much more manageable and has improved greatly.  My gastroparesis is worse than dryness, fatigue and yes, even brain fog.

Regarding brain fog or memory issues, I've never seen any concrete explanation as to why we Sjoggies have it.  Furthermore, most doctors seem to dismiss it and act like you are the only one to mention this to them.  But, we see on this forum about 80 to 90 per cent have it. 

I personally expect very little from my physicians these days other than my prescriptions.  Don't misunderstand, I know doctors are only human beings practicing medicine.  I thnk Sjogrens gets dismissed though it certainly rocked my world.

Not sure I answered your question about staging but wanted to express some of my thoughts.

Anna
« Last Edit: April 21, 2012, 04:41:28 PM by ohiolady »
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lostone

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Re: Stages of Sjogren's?
« Reply #8 on: April 21, 2012, 12:42:30 PM »
They left out stage 4,, complete destruction of the glands,,isolation, desperation, and fear,

aussie mum

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Re: Stages of Sjogren's?
« Reply #9 on: April 21, 2012, 01:19:35 PM »
I think Sjogren's probably is a staged disease.... it's just that not enough time and money has gone into research to formalise everything. The main variation that would complicate an official staging system would be the huge percentage of sero-negative patients.

We all know these scientists (and Drs) often need to see the numbers in your blood tests before they actually believe that you have SJS.
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Cheryl

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Re: Stages of Sjogren's?
« Reply #10 on: April 21, 2012, 04:08:39 PM »
Genko,
Thanks for posting that.  I found the article interesting, but I know that my own illness has not followed that predictable progression.  ("Stage III" preceded "stage II" in my case.)   I appreciate that the writer acknowledged systemic involvement and didn't make Sjogren's sound like just a nuisance. 

The one thing we have proven in this forum is that each of us is different.   Even so, there is almost always someone you can relate to.  Thanks to each of you for support and encouragement!

Cheryl
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gold55

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Re: Stages of Sjogren's?
« Reply #11 on: April 21, 2012, 04:34:56 PM »
I'm like rnathans in that my neuro problems outweigh any dryness of eyes and mouth although I do have dryness I finished menopause at age 50 which might have a tiny bit to do with it.  I have read in a Sjogrens book by Dr Wallace or Fox (there's my horrible memory) that even in the end Sjogrens sufferers still have 1/2 of a healthy functioning saliva and tear gland.  One of them denies the statements of total gland destruction.  Of course I remember this because it makes me happy for any future treatments.

I believe that I've had my disease for ~30-35 years and it's been slow progressing.  I remember having muscle/tendon aches and pains in college, possible pluerisy and foot pain on and off.  There was a time that a doctor ran tests for Lupus back then and of course I showed no blood markers so they thought it was all in my head!   I also had xrays of my chest for a job in college and the doctor found scar tissue on my left lung and blamed it on Valley Fever even though we don't know when I had it.  Doesn't seem like the medical community has progressed much since the 70's in the Sjogrens area.   
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gold55

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Re: Stages of Sjogren's?
« Reply #12 on: April 21, 2012, 04:48:05 PM »
thanks for posting that article...food for thought!  My Dad passed away at 64 from a type of lymphoma and my little sister had severe Non-Hodgkins lymphoma in college so I think it's pretty weird that I end up diagnosed with SJS which can result in lymphoma.  Almost makes me think about the gene connection with my Dad and half-sister.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

eyeamdry

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Re: Stages of Sjogren's?
« Reply #13 on: April 21, 2012, 09:18:08 PM »
No matter what the article says, we all know everything we read is true. Right?  Wrong.  Sometimes it makes one wonder how some things get published and who approves them.  I don't know if SJS has stages or not, but as one said the article is a little "funky."

warmwaters

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Re: Stages of Sjogren's?
« Reply #14 on: April 22, 2012, 03:04:32 PM »
In a lot of cases, noone approves these article. Things like ehow use independent contractors or volunteers to write the articles.  The article is as good as the person writing it is knowledgeable.  Used to do some of that kind of work myself for web articles, so I've seen the process for bidding on articles. Usually something like 5 or 6 articles for $20.  So you can imagine how much time someone puts into the research.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers