Author Topic: Anyone know some Sjogren's statistics?  (Read 270 times)

Deseree

  • Newbie
  • *
  • Posts: 42
Anyone know some Sjogren's statistics?
« on: October 05, 2018, 10:53:07 PM »
I've been having a difficult time finding statistics on the various symptoms and complications of Sjogren's and am hoping someone here might know or be able to provide a link regarding the following:

1. What is the approximate age group distribution of people with Sjogren's? I know it's supposedly more common in women over 40, but does anyone know the actual percentages? I feel like there are waaaay more young people who have this, yet everywhere I look says its not a young person's disease.

2. What percentage of people actually go on to develop more than the sicca symptoms? Does it usually stay steady as dry eyes and mouth? Or will most develop pain and fatigue, etc eventually?

And finally, the one I would most like to know:

3. What percentage of people lose either the majority or 100% of their salivary and/or lacrimal function? If complete destruction is inevitable, how on earth does a person continue to function?!?

I've searched what seems like every journal article, website, and scientific paper, yet I can't seem to find any statistical analyses on these questions. Thanks for any info!
30 year old female. Positive ANA and RF. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

happylife

  • Full Member
  • ***
  • Posts: 164
Re: Anyone know some Sjogren's statistics?
« Reply #1 on: October 05, 2018, 11:21:19 PM »
Hi Deseree,

I have a lot of research papers published mostly by NIH. When you search in google add "pubmed" along with other terms you would get a lot of relevant papers.

You will not find one single global statistics, but you will likely find statistical observation for that particular study which might have covered 100 or 200 patients. I am writing my responses based on my memory of what i have read which should give you some idea. But rely on the actual pubmed papers for your decision making.


I've been having a difficult time finding statistics on the various symptoms and complications of Sjogren's and am hoping someone here might know or be able to provide a link regarding the following:

1. What is the approximate age group distribution of people with Sjogren's? I know it's supposedly more common in women over 40, but does anyone know the actual percentages? I feel like there are waaaay more young people who have this, yet everywhere I look says its not a young person's disease.
==> Sex ration : 90% women, 10% men. Typical age around 45 years. Range 10 years to 70 years.

2. What percentage of people actually go on to develop more than the sicca symptoms? Does it usually stay steady as dry eyes and mouth? Or will most develop pain and fatigue, etc eventually?
==> 20% patients sicca only. Remaining 70% will develop more than 10 diseases. Another important grouping. 80% will have normal-sjogren, 20% will have neuro-sjogren. 70% of neuro-sjogren patients are sero-negative. 20% of normal-sjogren patients are sero-negative.

80% patients will develop the following - fatigue, joints pain, dry eyes, dry mouth, dry skin.
20% will develop - dRTA, Neurological involvement, Liver involvement, Thyroid involvement.
50% will develop additional autoimmune diseases
10% will develop non-hodgkins lymphoma

And finally, the one I would most like to know:

3. What percentage of people lose either the majority or 100% of their salivary and/or lacrimal function? If complete destruction is inevitable, how on earth does a person continue to function?!?
==> Most people will lose salivary function and lacrimal function eventually. If put on restasis and/or systemic immune-suppressants this full-destruction can be delayed.
Dry eyes and dry mouth are bad.....but the diseases which actually makes sjogren patients life miserable are the following.

fatigue
joints pain
non-hodgkins lymphoma
trigeminal neuralgia (25% of these patients will commit suicide as the pain cannot be controlled in many cases)
renal damage
multiple sclerosis
peripheral neuropathy
.....the list goes on

I've searched what seems like every journal article, website, and scientific paper, yet I can't seem to find any statistical analyses on these questions. Thanks for any info!


markt

  • Full Member
  • ***
  • Posts: 136
Re: Anyone know some Sjogren's statistics?
« Reply #3 on: October 06, 2018, 06:10:13 PM »
Other folks past doesn't have to be your future.  The standard of care for sjogrens is changing a bit... be bold, be aggressive.

Its important to be alert for things that could happen... but don't assume the worst.  It can make you sicker than you are.