Any mother-daughter Sjogren's sufferers?

[heidiaj]

I found out that I had Sjogren's markers when I was 50 years old.  My daughter is not quite 29.  She has had a lot of abdominal pain & testing with not much for results.  Now she has a corneal abrasion that had her in the ER writhing in pain, with docs now checking her daily.  Like me (before I couldn't wear them anymore), she had been a contact lens wearer. She found that the amount of time she could wear them was decreasing to where she could only wear them for about 4 hours, when she always wore them all her waking hours (as did I).  Tomorrow she returns to the doctors who are treating her eye, and I suggested she tell them her mom has Sjogren's.  She's had these phantom symptoms with urinary tract and bowels, and now an eye issue.  Might there be a genetic link that would cause her to have Sjogren's, and, if so, would a doctor understand why it may make sense to run some blood work?  I'm 4 hours away from her, and as a loving mother, am worried sick about her health.  Any advice or pertinent experience?

[ohiolady]

Yes, I have Sjogrens and my daughter has Lupus.  I wouldn't be surprised if my daughter has secondary Sjogrens.

She should tell the doctor about her family history and ask to have an autoimmune panel done.

Good luck.

Anna

[heidiaj]

Thank you for your response, Anna.  My daughter seems a bit hesitant to ask for this type of work-up (I don't think she wants to know!!), but I am going to bring it up again.  She has had a lot of kidney area pain and gastrointestinal stuff. Two years ago she had terrible pain and her labs were off for liver & kidney functions.  The docs never came to any conclusions, and she slowly felt better. Then she had the recent situation with a scratch on the cornea.  It wouldn't hurt for her to have the autoimmune panel done.  I appreciate your weighing in on my question and wish you and your daughter the best.  It's certainly not an easy road, but it sure does help to have the support on this site.  Take care!  Heidi

[irish]

I am 73 years old and my Mom passed away in 1984. After I got diagnosed I could look back and see all the symptoms my Mom had that were from Sjogrens. She had very dry eyes and was always rubbing them and using eye drops plus had the redness on the lids.

She also was always clearing her throat and dealing with dryness. She would always have to go get a glass of water to keep by the phone when she talked on the phone to me. She also had the same bladder issues caused by inflammation that I have. he was always suffering from some ailment had what was called gall bladder issues back then. I think it would be called reflux now.

I feel bad that she had to be so miserable back then cause there were so little meds and knowledge to even address the issue. I have a couple of kids who probably have Sjogrens as they have some autoimmune diseases.  They are having some dry eyes and mouth and not suffering a lot yet. They do have the reflux, joint issues, thyroid issues plus one is having liver blood work that go up and down and the doc is watching because of the autoimmune history in our family.

One has celiac disease and the other has Hashimotos encephalopathy and is on methotrexate 25 mgm  a week. Most of the literature out there says that there is a propensity towards autoimmune disease in family that is carried down from one generation to another. They don't usually say  inherited. The researchers seem to think that when we have the propensity for autoimmune and certain triggers occur one can develop autoimmune disease. My husband and I both have autoimmune disease so our 3 boys were not very lucky as far as their health goes. Good luck. Irish

[heidiaj]

Hello, Irish -
Thank you for sharing your experience and insight.  My daughter had a terrible "bout" two years ago, where she was doubled over in pain.  Blood tests indicated elevated liver enzymes, but no determinations were made.  I have experienced interstitial cystitis, and she has also had incidents of painful urination and abdominal swelling.  She has also had pain in the kidney area. The more I think about it, the more I feel strongly that she should tell her doc about my Sjogren's, and have the appropriate lab work to see if she may have an autoimmune issue.

Thank you for taking the time to tell your story.  It sounds like you and your family have more than your share of challenges.  For me, the decrease in my quality of life health-wise has only made me look for and find all the little reasons to feel blessed.  My best to you and yours!

[A Mom on Spin]

My three daughters all have autoimmune or rheumatological issues since they were young.  The oldest (29) has spondyloarthritis.  My middle daughter (26) has had lupus since age 11.  My youngest daughter (24) has many of the issues you speak about.  She had Guillain-Barr? syndrome her senior year in college and has never been the same since: positive ANA, abdominal and urinary pain, crazy liver enzymes, hashimoto's, neuropathy, vitamin B-12 deficiency.  Since she, too, was diagnosed with spondyloarthritis at a young age, she has always been followed by a rheumatologist and has seen countless specialists as well.  No one has been able to pinpoint what exactly is going wrong and I'm beginning to believe she will always live with different overlapping autoimmune issues.

As for me, I knew I had the SSA marker for about four years before my sicca symptoms hit.  Two of ,y brothers also have autoimmune conditions.

i know how hard it is to watch your children struggle and wish I had some wonderful advice to offer you.  Patience has become my byword.

[SunshineDaydream]

Nobody else in my immediate family has Sjogren's, and I'm not aware of anyone in my extended family with it.

My mom has IgA deficiency and my sister was diagnosed with underactive thyroid when she was in her teens.

heidiaj, did your daughter end up mentioning your Sjogren's to her doctor at her appointment earlier this month and getting a rheumatology blood panel done?