Has anyone hear got TNF receptor associated periodic syndrome.

[willowwag]

Had my routine Lupus consultant app today and was telling her how I have been and the usual things as we do..and well she thinks as well as SLE, serousitis etc etc that i may have a condition called TNF receptor associated periodic syndrome they call it TRAPS for short. She's re doing my ANA test as well and some others to see if I have this rare thing. I say thing as I have no idea what this is and would be grateful if anyone had any information on this. Thank you .

[noonoo52]

Hi willowwag, interesting not seen any ref to this before so looked up rheumatology.org American college of Rheumatology may help a little did find another site but its for clinicians and couldn't understand it but it did refer to people with inflammatory disease. Sound like something that could be inherited from one parent? Let us know how tests go I would really be interested in the outcome. Take care and good luck. Nx

[willowwag in reply to noonoo52]

Hi noonoo love the name by the way. I know theres not really alot about this condition. My Rheumatologist who looks after me because of my SLE seems to think that I also have this (TRAPS) thing as well as having Systemic Lupus because Of the symptoms I have along side my Lupus. They have sent bloods away and I have to take my temp every day. She printed me out some information but I cold not make head nor tail of it. going to have a read through the information thats Paul from Lupus uk has recommended. I never thought you could have a Autoimmune condition and a Inflammatory Disease slog side each other, she said TRAPS is very rare and I would have to go to london to a gene centre if found positive for the gene. Its a totally mystery and this is a new one on me. Will keep you posted.

[Paul_Howard Partner LUPUS UK]

Hi willowag,

I have found a helpful patient information booklet by UCL about TRAPS which you can view online and download at ucl.ac.uk/amyloidosis/pdfs/...

[willowwag in reply to Paul_Howard]

Thank you so much Paul, you always come to the rescue with information. Thanks again .

[noonoo52]

Yes well done Paul, interesting subject, would like to look myself at that especially as it pretty rare. Take care Nx

Ps don't forget to keep us upto date on test and appointments willowwag. It's funny you and barnclown both liked my name and I was thinking everyone has such great names and mines a childhood thing. X

[willowwag]

Hi noo noo, thats what reminded me of my childhood, I had a blanket I called my noo noo lol. I love the name and of course keep you updated.

[soootired]

Hi my rheumy has gone down the same path with me because I had one positive ana and then since hydroxy it'd been negative. I rather wonder if it's the latest thing or something!!! I was referred to ucl hospital - the department Paul mentioned - and saw a lovely professor Hawkins today who feels in his opinion I'm classic lupus and bloods aren't everything. However he wants to rule it out so sent me away with blood vials and padded envelopes to have my bloods done every fortnight for the next couple of months to be posted to ucl to be tested for a particular something or other (it's been a long day) that is a very specific marker - more so than crp and esr. All I know is they deal with various auto inflammatory, very rare hereditary diseases, one of which is traps. They do genetic testing there.

[willowwag]

HI so tired, thats really interesting your post I got diagnosed with Lupus 6 years ago because of my symptoms and conditions and had a positive ANA and the other one can't remember what thats called and have had every time tested, because the way I have Lupus and SLE and Serousitis, they are looking to see if they missed the TNF receptor associated periodic syndrome also as I have these crippling bouts of abdominal pain with constant vomiting and very high fever. All bloods go crazy LFTs Us and E's and Amalise. CRP through the roof which lasts for days and my body goes into a melt down blood pressure drops to 78 over 43 and I lose consciousness with it. When i was a baby I had cardiac arrest at the age of 3 where my heart stopped for a short while, i suffered fits and fever bouts and febral convulsions all through my child hood. they did a brain scan at 9 where they found a defect in the back on my brain which control the bodys temp this my mum was told should heal by the time i turned 18. I still don't regulate my temp. And when I am very poorly my liver and kidneys really struggle and I have a rapid onset of fever. I have morphine at home because of this pain etc to enable me to get medical attention urgently. I had a liver biopsy the other day that should chronic inflammation and some damage. Im just hoping that if it is TRAPS then at last I can just live with my Lupus etc and can finally get a hold of these debilitating episodes. The crushing pain has a grip on my life as well as my body...

[noonoo52]

Hi willowwag, wow that's some history from 3 years old, you are really going through it. I am just so shocked every time I read another post just how many people there are that have multiple conditions, it's unbelievable. Why is it that some of these conditions are never publicised on television documentaries, it's often about children with ADHD, bad behaviour kids and other such like programmes. It would be nice to see a series of health programmes that discussed autoimmune diseases as there are so many, maybe our loved ones and family will realise what we are going through. I purchased a book (big thick book) called "The Paleo Approach" it's all to do with autoimmune disease and it lists so many, I have only just started it and I am already hooked on it, it's written by Dr. Sarah Ballantyne PhD she herself being diagnosed with autoimmune disease. it's got so much information in it, I am on page 10 of 432 so lots to go.

I am yet to check the site that Paul Howard mentioned but it's next on my list so I may have a better understanding of what you may have. Please remember to tell us when you get results. I have had so much advice on this forum and I am very appreciative to everyone who has contributed the information, it has been so helpful in me understanding and accepting my disease. It was also good to vent today with the help of Amanda, thanks for that,(I am not very good at grammar)

Speak soon willowwag.

Ps funny you should have a blanket when you were little that you named noonoo, my brother was 5 when I was born and he couldn't say Nicola so all he could say was noonoo and it stuck, I had a great family childhood (not school life) and that's my reason for using it, it reminds me of it. Take care Nx

[willowwag]

Hi Nic, Noo on what a lovely reply, thanks for the message back, Im with you I totally agree that maybe there should be more on rare conditions on TV i guess we can hope. lol. Like the sound of your book where did you get it from chick,