So baffled by all the jargon please help.

[willowwag]

Hi all, I have been having a really bad time of it at late and appointments are 3 months apart and when you have Lupus as you know a awful lot happens to you in 3 months. Last appointment I had to chart my temp every day. It showed I had a few for over 3 months for up to a week at a time. This was something I wouldn't have noticed before without charting it. This has made my consultant think that I would be suffering from not only lupus and my other condition but a condition called TRAPS Formerly known as Familial Hibernian fever, Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS) is a rare, genetic disease that causes recurrent episodes of fever that typically last more than 1 week and are associated with chills and severe muscle pain in the torso and the arms.and other symptoms such as excruciating abdominal pain with vomiting. The outcome from the appointment is she is putting me forward for funding for the Genetic Hospital in london that deals with this rare genome condition..Im totally baffled and not sure if the funding is to diagnose it or for drugs to treat it. Has anyone ever had or heard of this. I must say my consultant is amazing and she us trying hard to make my life with Lupus easier and can see how horrid this is on Lupus patients. Any information would be of any help xx Thanks

[willowwag]

Sorry all typo in the above few should say fever lol x

[misty14]

Hi willowag

Sorry to read your having such a bad time!. Whilst I can't help about Traps, what an awful condition it sounds. I would just like to say you could always ring your Lupus clinic to see if you could be considered for a cancellation to bring your appointment forward. Alternatively, is there a Lupus nurse you could ring?.

I do hope things improve for you soon with the right treatment. X

[willowwag in reply to misty14]

Hi misty I know it sounds all so baffling, I did see my consultant Monday just gone my husband also came with me as always and he was a baffled by all the TNFR and tramps and protein figures . After asking her to explain a second time I thought ahh she's got so many people the see like me I didn't have the heart to ask her to explain again lol.. Even the references online to if are baffling. x

[misty14 in reply to willowwag]

Hi willowag

It must have been such a shock to be told you have such a rare , complicated illness. It must be very baffling for you both. Lupus is hard enough without this or is the rare illness instead of Lupus as they sound quite similar?. Good luck with it all, I hope treatment helps you. X

[willowwag in reply to misty14]

HI Misty when she first told me I was taken a back the TRAPS is as well and my lupus. I have a Fever for 2 weeks out of 4 sometime and its goes from in the 38 range up to 40 and it says there for about a week or so as well as all the abdominal pain and vomiting mmm sounds fab don't it. Thought my Lupus and other conditions were bad enough, I she thinks I have had TRAPS from birth and I did have episodes through my childhood were it could have been traps looking back, I had feral convulsions which I died for a few mins and was resuscitated. but by the age of seven when you should have grown out of it. I continued to not be able to control my temp, when I got sick I became so disoriantated with such a high fever i would not know where I was and would walk into walls etc. would have bouts of abdoninal pain and vomiting for weeks on end. All this make sense now looking at things. So yep its another one to add to my complications. xxx

[misty14 in reply to willowwag]

Hi willowag

So sorry that Traps is as well as Lupus. What a horrible illness that you've suffered for a long time!. I hope you get treatment for it soon and you improve. X

[Paul_Howard Partner LUPUS UK]

The American College of Rheumatology has quite a useful page about TRAPS with lots of information which I hope you will find helpful - rheumatology.org/I-Am-A/Pat...

[willowwag]

Thank you so much Paul. Will go and have a look now.

[willowwag]

Hi Paul, I have just had a good look at the information you provided, and I have to say it was very informative. I can clearly see why she thinks I might have this on top of my Lupus. Thank you ever so much again for the information.