Author Topic: Does Sjogrens run in your family? (Poll)  (Read 245 times)

araminta

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Does Sjogrens run in your family? (Poll)
« on: November 30, 2019, 01:14:40 AM »
When I first spoke to my doctor about Sjogrens-type symptoms, he asked why I was worried, did I have relatives with Sjogrens?   When I said no, he seemed to think it was strange that I was worried.  I was wondering how many of you think your SS is a family thing?
« Last Edit: November 30, 2019, 07:46:09 AM by araminta »
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Maria3667

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Re: Does Sjogrens run in your family?
« Reply #1 on: November 30, 2019, 02:49:53 AM »
Hi Araminta,

Intesting question! It might be a good idea to post this question as a poll? Then you'd gather some insights. You could add extra options like: 'No but a family member has reumatism (or arthritis, lupus, psoriasis - to name a few common ones).

By the way, it is a family thing, research has shown a defect in certain types of genes.

« Last Edit: November 30, 2019, 02:51:46 AM by Maria3667 »
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, thyroid meds, 25mg quetiapine, 10% testosterone. Allergies: nickle, methylisothiazolinone, latex

araminta

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Re: Does Sjogrens run in your family?
« Reply #2 on: November 30, 2019, 04:23:05 AM »
Thank you, Maria, I've taken your advice.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Maria3667

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Re: Does Sjogrens run in your family?
« Reply #3 on: November 30, 2019, 05:11:45 AM »
Great, thanks  ;D

And voted!
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, thyroid meds, 25mg quetiapine, 10% testosterone. Allergies: nickle, methylisothiazolinone, latex

irish

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Re: Does Sjogrens run in your family? (Poll)
« Reply #4 on: November 30, 2019, 09:29:59 PM »
I have a family with a history of quite a few autoimmune diseases. No Sjogrens that I know of but it tags along with the other diseases so hard to tell.

I hope the doctor that asked if Sjogrens ran in your family doesn't think that a no answer excuses him from doing testing or doing questions. Try to fill out all the weird health things you have been accumulating and putting up with. And tell him that you aren't nuts!!! I was accused of being psych/hypochondriac for years. Good luck. irish

araminta

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Re: Does Sjogrens run in your family? (Poll)
« Reply #5 on: December 01, 2019, 04:54:20 AM »
No Irish, he wasn't that bad, he did refer me to a rheumy.   However my Schirmers test was OK (even though the ophthalmologist said I had MGD and some corneal erosion) so she wasn't convinced.  I've had three blood tests done over the past four years, all normal.   I know my next step is to have the salivary gland biopsy, but I daren't go ahead with that at the moment, as my 93 year old, very disabled mother is extremely frail, and every day I expect to be called to her bedside, and maybe have to deal with something serious.   I feel tired enough as it is, without having to cope with that plus stitches in my mouth!
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

SjoGirl

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Re: Does Sjogrens run in your family? (Poll)
« Reply #6 on: December 01, 2019, 04:04:53 PM »
FYI there are rheumatologist that will diagnose you based on symptoms and bloodwork alone, no biopsy needed. My first rheumy diagnosed me then I had a very painful lip biopsy when I went to Hopkins for a second opinion. I was told I had undifferentiated connective tissue disease instead of SjS but that the treatment was the same. Subsequent rheumys have stuck with SjS.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

irish

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Re: Does Sjogrens run in your family? (Poll)
« Reply #7 on: December 02, 2019, 12:34:54 AM »
I was going to suggest skipping the biopsy and ask for treatment. I got diagnosed with a positive lip biopsy that was ordered sort of accidentally. I got no treatment then at all and was finally diagnosed with myasthenia gravis 3 years later and put on a strong IVIG gor that. I thought maybe the IVIG would help the Sjogrens. After 13 years of IVIG my Sjpogrens has not gotten better and is, in fact, getting worse. I am ono the Plaquneil for quite a few years and that helps the aching.

Just thinking that the gland biopsy could be negative. I don't know if that gland gives much pain with a biopsy. I hope not.
two years after my lip biopsy I was in a Sjogrens study at the university. They did blood work and wouldn't you know after 40 years of illness and tests I finally had my first positive blood work. The autoimmune stuff is very tricky me thinks. Good luck. Irish

araminta

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Re: Does Sjogrens run in your family? (Poll)
« Reply #8 on: December 02, 2019, 01:26:56 AM »
Thank you for your suggestions, Sjogirl and Irish.   I'm very sorry to hear your painful/frustrating stories.

I am in the UK, with the NHS, and unfortunately I'm sure I won't be allowed any treatment for Sjogrens till I've gone through the lip biopsy.   (Though as you say, Irish, that too could be negative. :()

Thanks to all who have voted, I hope more will do so.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Jenny

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Re: Does Sjogrens run in your family? (Poll)
« Reply #9 on: December 03, 2019, 04:28:13 AM »
Both my older sister and I were diagnosed by blood test and dry eyes and mouth. I?m pretty sure my mother had it as well as she suffered from dryness, fatigue and pain.
63 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
Maloxicam, Lisinopril, Norco, misc.vitamins
4 discs in low back fused. Shoulder replaced 2015 & 2017 Need knee replaced.
4 hand surgeries