Thursday, November 10, 2011

What does TRAPs looks like?

It's a google search I get a lot. What does TRAPs look like? Good question.

This is what it looks like:

The TNFRSF1A gene is located on the short (p) arm of chromosome 12 at position 13.2.
More precisely, the TNFRSF1A gene is located from base pair 6,437,922 to base pair 6,451,282 on chromosome 12.

Yup, that little blip is where all the mutations can occur to cause all this trouble.

More than 60 mutations in the TNFRSF1A gene have been found to cause tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS).

I was tested either for 2 or 3, and because they did not come back positive for a mutation, I am deemed not 'diagnosed' for TRAPs, therefore, I am not able to be funded for enbrel.

With some patients with some various autoimmune or autoinflammatory diseases, there is a nice salmon rash that appears in various parts. Lupus has the 'butterfly' mark, some with Still's Disease get a patchy salmon rash just before their elbow on the inside of the arm.

FMF'ers and TRAPpers really don't have a distinguishing feature except maybe a stereotypical racial identity.

For those with FMF, you're looking at a melting pot of Greek, Turkish, Iranian, Italian people who's forefathers have intermingled. It sometimes appears in Jews of the area but not the entire Jewish population.

For Traps, you're looking at the Scottish and Irish folk who have not interbred with the English. When you have mixed with the general English people, you are more likely to have another autoimmune or autoinflammatory disease, but because of the variations of mutations, you might be affected.

My link back to Ireland is my maternal grandfather who was Irish, however my mother had quite olive skin.

Given that my last name is now Scottish, I sort of fit the TRAPs picture.

The single most identifying feature between FMF and TRAPs and against the 'normal' picture of a person is the fever.

This is in F, of course. For those of us who use Celsius, it's as follows.

Normal Body Temp: 37C
Oral Fever Temp: Over 37.7/37.8C
Rectal Fever Temp: Over 38.05C

I've taken various photos of the 'mask' like redness I get when I have a fever, but all I was told was: "It looks like you have a fever."

There ya go.

What is the difference between an Autoimmune Disease and an Autoinflammatory Disease?

Autoinflammatory diseases (AID) and autoimmune disorders both result from the immune system attacking the body’s own tissues. Both of these disorders also cause inflammation. However, in autoinflammatory diseases the innate or primitive immune system causes inflammation for unknown reasons, whereas in autoimmune diseases the immune system mistakenly reacts with the body’s own cellular components as if they were foreign antigens. Autoinflammatory diseases also have a hereditary component usually associated with a gene mutation.

The article does state: "Attacks of TRAPS can be prevented with colchicines, whereas glucocorticoid steroids are used to reduce symptoms." Which is sooo not the way I want to see doctors treat patients with TRAPS. Seriously, Colchicine makes you poop all day long, you become dehydrated and sore. It doesn't do much at all to stop or shorten flares.

So, while I can't show you what TRAPs looks like, as I don't get an itchy rash on my legs, and I am more affected by fever, inflammation and arthritis, which are all invisible, I can show you what maintaining TRAPs looks like.

This is my morning ritual:

That is Prednisone, Citalopram, Prilosec, Magnesium, Spirulina, and my pain killers, Ibpuprofen, Codalgin and Diclofenac. I take the Seroquel at night. During times of pleurisy, I take the Vick's Formula 44.


I often get tummy upsets, either in the form of reflux or just a general upset stomach. I take both Aloe (this is Lifestream Aloe) and Slippery Elm Powder. Slippery Elm Powder is amazing and you should all add it into your diets.

When feeling overwhelmed or tired, I take the Elevit Multi for Women with Children, and when I start to get a bit achy in the kidney, I take Red Seal Cranberry capsules. I often get cystitis and the cranberry works really well to help prevent it.

For stressful times, I take L-Theanine and for coughs that won't settle, I take Wild Oregano Oil. Both are from Solgar and were finds from my friend Anna. (Hi Anna!)

Because I've been on the steroid a long time, I have to take calcium. I often forget as I'm supposed to take it away from cups of tea and as I drink tea all day, I don't remember to take it.

You can see they even upped my dose from 500mg to 600mg twice a day.

And my favourites, my health promoters.

I love to take an apple or two, cover it in squeezed orange juice and have the two together.

Tomatoes, when in season, are also divine. I like the truss kind and find the smell of the tomato vine heavenly.


Tara Rawson said...

I was started an anakinra injections a year ago. Life changing. Ask your doctor. Still exhausted but functioning now

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