Saturday, 20 September 2014

That’s Pants!!

What do you think of when I say the word ‘pants’?

If you’re Canadian, you probably think of this -


If you’re British, you probably think of this -
Or you think of ‘pants’ as a negative exclamation, ie: “That’s pants, that is.”, or “What utter pants!”

But if you are British, have Crohn’s Disease and are on a biologic drug such as Adalimumab (Humira) or Infliximab (Remicade), you are probably enrolled on the “PANTS” study.

I can never decide if that name is just an IBD joke, or if someone quite seriously named it that, only to have all of the patients and hospital staff involved with it across the UK giggling childishly every time we mention it. Either way, it stands for "Personalised Anti-TNF Study". How they got PANTS out of that, I have no idea.

As I’ve stated in several previous posts, biologic drugs are still new-ish, and there are a lot of things that doctors don’t really understand about them. Humira and Remicade are a type of biologic drug known as an “anti-TNF” therapy. TNF (Tumour Necrosis Factor), or more specially, TNFa (a for alpha), is a component of the immune system implicated in auto-immune disorders like Crohn’s Disease and Rheumatoid Arthritis. And like everything in the immune system, there is more that we don’t know that what we do know.

What we do know about anti-TNF therapy is that when it works for a patient, it works really well. It gets the inflammation down, lets the inflamed area heal (guts in the case of IBD, joints in the case of RA) and seriously reduces the need for surgery and steroid treatments.

What we also know about it is that it is bloody expensive. I currently have £2000 of medication in my fridge if that gives you any indication as to what we are talking about.

What we also know is that, like all medications, they can have serious side-effects.

And what we also know is that it works really well in about 70% of patients. And it doesn’t work at all in 30%. And no one really understands why.

Hence the study. What they are trying to understand is what is it about the 70% and what is it about the 30%. And they are also trying to see if there is a way to “personalise” the treatment to be sure that it will work and will continue to work. It builds on a lot of previous work on genetics in IBD and they are trying to figure if there are particular genetic factors or biomarkers that make it work or not work. Needless to say, with my family history of IBD (father, paternal aunt, paternal cousin, and we suspect my paternal grandfather and great-grandfather), the hospital were very anxious to get me on board with it.

I don’t have to much to be in the study. Every three months or so when I am at the clinic, I add the research nurse to the list of professionals I see. The research nurse is lovely, but, um, well this probably sums her up best -
She always forgets something. She gets me to fill out a survey, weighs me (again!!!), gets one of the consultants to poke my tummy, adds another four vials to my blood work regime and packs me off with equipment for a, ahem, sample, which I have to post off to the research sponsors in Exeter.



Yes, I said post. As in, by Royal Mail. I feel so sorry for the postal workers (rest assured, it’s send sealed inside several different containers and bags, rather like a Russian doll). But that’s all I have to do. That’s my big contribution to science.

If you want to read more about the PANTS (snigger) study, you can read more here - https://pantsdb.co.uk/about 

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