Author Topic: Young people with Sjogrens  (Read 1834 times)

Sildasher

  • Newbie
  • *
  • Posts: 33
Young people with Sjogrens
« on: December 06, 2015, 03:40:43 AM »
Hi there.. just wondering.. Anyone in their early 20s here? And how were you diagnosed?  Do share.. thank you :)

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 704
Re: Young people with Sjogrens
« Reply #1 on: December 07, 2015, 01:05:29 PM »
There have been a few threads here in the past regarding young members. I'm including one here where I refer to a Facebook group and attach another "young" thread. The posters didn't necessarily provide details about how they were diagnosed, though. Maybe some will come forth and provide information in your thread here.

I'm responding with attachment of the other "young" threads so you know you are not alone.

http://sjogrensworld.org/forums/index.php?topic=28322.msg300874#msg300874
« Last Edit: December 07, 2015, 01:09:24 PM by SunshineDaydream »
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

SjogiBear

  • Newbie
  • *
  • Posts: 18
Re: Young people with Sjogrens
« Reply #2 on: December 08, 2015, 04:34:41 AM »
I don't know if this information is of any use but although I am now 49, I am told that I have had Primary Sjogrens since childhood although it was diagnosed at age 16 as being juvenile arthritis and then reclassified as lupus in my mid-30s.  My earlier symptoms included joint pain and swelling, chronic anaemia, rashes, gland swelling, fever and ultimately kidney and liver failure.  The typical Sjogrens symptoms didn't occur until I was about 40 when I've had more generalised aches and pains, problems with lungs, throat and vocal cords, gastro-intestinal issues, heart issues (pericarditis and heart rhythm problems) and currently nerve issues.  It is all apparently constituent parts of the same picture according to my consultant!
Diagnosed with Stills Disease as a teenager in the 1980s; reassessed as Lupus with Hughes Syndrome in my mid-30s after recurrent miscarriages; diagnosed Primary Sjogrens Syndrome in mid-40s (2012). Started hydroxychloroquine 2014. Carbocisteine. Aspirin. Nerve block for occipital neuralgia.

aussie mum

  • Hero Member
  • *****
  • Posts: 604
Re: Young people with Sjogrens
« Reply #3 on: December 09, 2015, 10:40:10 AM »
I hope this isn't an overshare. I have gained so much from the caring, knowledgeable people who take the time to post on this site, so thought it was important to share my daughter's story, albeit from her Mum's perspective.

My daughter was diagnosed at 16. She had been suffering what we thought was unrelated symptoms for a few years (continual thirst, gastro issues), but it was the fatigue that lead us to push our GP for answers.

My husband had been diagnosed with food intolerances by an immunologist and we thought our daughter was heading down the same path. To our surprise, something showed up in the blood tests he took. Naively, I thought "great, we can fix this" - that's how little I knew about AI diseases.

She'd be the first to admit that it's been a roller coaster ride ever since. Her final years of school were difficult both academically (brain fog and sick absences make maintaining your levels very difficult) and socially. You quickly find out who your true friends are when you cancel out of social events at the last minute and can't play sport to your previous levels. It certainly didn't help that she couldn't tolerate the normal medications for treatment.

Subsequently depression set in. Probably a mixture of the SJS diagnosis, a car accident that resulted in diagnosis of a previously unknown heart condition and developing Thyroid issues. The year she turned 19 was pretty bad. Her Immunologist referred her to a Psychiatrist and she was on medication for a while, which really didn't help. In the end, treatment for her Thyroid Condition and her own strong determination to move forward brought her out of that dark period.

While her life has been quite difficult and she does suffer most of the typical SJS symptoms , it's not all doom and gloom....

Nine years down the track (wow has it REALLY been that long) she's 25 and she's now a Mum. She has a great partner and a gorgeous little girl. She has to pace herself (google Spoon Theory) but still has to learn that accepting help around the house is not a sign of personal failure, it's a small but practical way her family who love her to bits, can help to save her spoons for things that REALLY matter.

She also has learned that a short course of Prednisone can REALLY help when it's needed.

Take care.
Aussie Mum
« Last Edit: December 09, 2015, 02:01:56 PM by aussie mum »
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Sjocool

  • Newbie
  • *
  • Posts: 29
  • Newly diagnosed
Re: Young people with Sjogrens
« Reply #4 on: December 11, 2015, 11:58:15 AM »
Hello! I'm fairly young. 25. You can read my story here  :)
http://sjogrensworld.org/forums/index.php?topic=27808.msg295717#msg295717
Sjogren's Syndrome, Lupus, Restless Leg Syndrome, Photosensitivity, leukopenia | ANA 1:2560, Actin (Smooth Muscle) Antibody (IGG) 108, SS-A Antibody >8, Thyroid Peroxidase Antibodies 9.

Sildasher

  • Newbie
  • *
  • Posts: 33
Re: Young people with Sjogrens
« Reply #5 on: December 13, 2015, 04:44:37 AM »
Thank you for sharing. The thing that bothers me the most currently is my fastro problems- gerd, gastritis and with depression, the symptoms just gets worse. Thankful for the people here for the warmth and kindness.

MetalFae

  • Jr. Member
  • **
  • Posts: 52
Re: Young people with Sjogrens
« Reply #6 on: December 16, 2015, 01:22:39 PM »
Hallo! I'm 28 if that's young enough for you. ^_^ Lol
Plaquenil 400mg, Salagen 7.5 3xday, Vyvanse 60mg, LoLoestrinfe, Premarin, Naproxen, Xopanex prn, probiotic, refresh drops, xylimelts, biotene toothpaste/mouthwash, Replens, B12, Vit D, melatonin, Flonase