Periodic Fever Syndrome also known as Auto-Inflammatory Syndrome.

[Jessie_2014]

Bit of a long shot as it's very rare but I am being tested for this and wondered if anyone has any experience of it either alongside lupus/sjogrens or having being misdiagnosed as lupus when it is this?!

[Barnclown]

Hello Jessie

This is new to me too. you've probably found this good link, but in case not:

en.m.wikipedia.org/wiki/Per...

i think it's probably not a bad idea for us to be aware of alternative diagnoses like this one...so thanks!

I'm being investigated by immunology...am having my 3rd appt soon this month. I think I'll ask them about this condition...the differentiation between this & lupus seems to involve the difference between the adaptive & innate immune systems. Very interesting...

Are you seeing immunology as well as rheumatology about this?

Wishing you all the best of luck & hoping you'll keep us posted

XO🍀🌻

[littleeffie in reply to Barnclown]

Thanks for link was too upset to look it up as mentioned in sons appt.

[Barnclown in reply to littleeffie]

Hmmm...effie, am vvv much feeling for you guys....well, isn't it positive if they are learning to differentiate these conditions..gotta be a step forward...

XO🍀

[littleeffie]

I will be following you on this as it was mentioned at my son's paediatrics appointment last week as he shows some Lupus/arthritis type symptoms but other issues which don't follow and he has had some blood tests done and on the results of those he maybe referred to specialist .I honestly hadn't heard of it so will be of great interest to see your outcome or any other replies because my son has enough issues to deal with and hoping nothing else.

Good luck and thanks for post.

[Jessie_2014]

Thanks for your responses. I hadn't heard of it until the other day. Am seeing an immunologist who specializes in it apparently so may have some more answers then. Very frustrating. I am in my early 20's and have had nearly 20 years of rare diagnoses and auto immune problems. I am still to find a treatment plan but am hopefully getting there. Wishing you both well.

[Barnclown in reply to Jessie_2014]

Take heart: I can totally relate to your frustration, having had my version of same for years: decades. Referrals to immunology are like gold dust...many believe all autoimmune patients need immunological investigation, but there aren't enough immunologists to cope! As of last Feb, Immunology is helping my rheumatologist & me greatly to understand & treat my individual version of immune dysfunction...as a result I'm much am wishing you the same...I think there is a very good chance you'll be getting clears answers soon

XO🍀

[Jessie_2014 in reply to Barnclown]

Yes I think you are right. This will hopefully give me some answers and although frustrating is hopefully a positive thing.

I will have to keep you updated

[Hidden]

Hi Jessie, I'd also be interested to see how you get on with the immunologist and your tests for this. Until your post, I'd not heard of it either. It's been really useful reading. I'm undiagnosed with several mystery chronic symptoms and this autoinflammatory syndrome describes some of them pretty accurately. I might mention it to my rheumatologist when I see him this week.

Good luck.

[Jessie_2014]

Update for you... Saw immunologist today. He agreed that I have such a vast and unexplained medical history that it definitely warrants further investigations so need to have further genetic investigations. He has started me on colchine to see if this helps with the fevers. I am frustrated and upset but glad things are being investigated!