Hi it is Jonnell again I have a question for you experts . What kind of symptoms make a doctor make this diagnosis?
Hi Jonnell :)
Both lupus and SjS can manifest in a lot of different ways and some of the symptoms overlap. Dry eyes and lack of saliva are an SjS hallmark and yet some sjoggies have neurological issues before the dryness and some sjoggies never develop neurological symptoms. It's all a bit of a minefield.
Low grade fevers can be a symptom of either as can joint, muscle and tendon pain. They often talk about a 'butterfly rash' on the face being symptomatic of lupus and sun sensitivity but sjoggies can suffer that too.
I'm sorry - it's impossible to come up with anything really definitive. Its up to doctors to piece things together.
The treatment would not differ vastly between both conditions anyway.
Take care - Scottie
As said most of the signs and symptoms are very similar..the dryness is hallmark SJS,and the rash and photosensitivity,and other bloodmarkers can swing it to SLE.Anti ds-dna is one,other lab markers are often factored in when making a diagnosis of Lupus.If it becomes a concern and they diagnose after testing it turns to SLE w/SJS overlap as Lupus is considered the main illness and SJS secondary(this is my diagnosis)for me the dryness issues arent terrible its mainly my eyes that bother me the most..I do have mouth issues but not as bad.
The drs probably wont look at an SLE diagnosis until your daughter hits puberty as this is one of the times when it seems to show(the theory is estrogen plays a large part in the disease itself)
*on a side note..get her life ins...I know this sounds stupid and jumping the gun as she is 4 and no I am not suggesting anything will happen to her...just if she ever does develop SLE she will not be able to apply for coverage then.I only have what I had before diagnosis and to get more the only policy I have found requires all of this
1. Its only 50,000 worth of coverage
2. You have to live and not be hospitalized for 3 yrs after diagnosis before applying.
3. During the first 2 yrs of policy issue you cant be hospitalized due to SLE complications.
4. Its 175.00 a MONTH :o
5. If you pass away during the first two yrs of issue you only get back what you paid in.
So look into options for her and dont mention SLE...I wish I had had more time before diagnosis to get coverage because now I cant afford it.
SLE is a hard illlness to diagnose I got lucky in the fact that blood markers,rashes,and symptoms were so prominent.Others are not so lucky and have to wait and see as they have some but not enough for a definate diagnosis.Most drs are very cautious to diagnose as it is almost impossible to get the diagnosis taken off(alot of times you cant)so they would rather wait and see than jump the gun and end up being wrong.
But both illnesses are eerily similar...just the dryness is more prominent in SJS.
Good luck to you and your daughter.I can only imagine how hard this is...I struggle alot sometimes..I can only imagine how hard it must be when you also factor in the desire she has to just be a kid.I wish you both well.Give her a hug from an internet stranger and good luck to you both.