Morning everyone
I want to tell you about how I got on when we went to London to hear about this new research into early intervention with RA to do with genetic link.
For a start, we were late as the sat naff couldn't cope with the road works all around guys hospital!
First there was a presentation by Dr Andy. It explained that there are changes in the blood up to 14 yes 14 years BEFORE the rheumatoid symptoms develop.
If you have positive rheumatoid factor
Positive anti ccp
In your blood work and have a close blood relative with auto immune disease (especially those with specifically ra) you are 40-50% likely to develop full blown rheumatoid arthritis.
Normally within 1 year.
The trial idea is to give people in this group a T CELL therapy called abatacept. It's not anti tnf but is a biologic.
This drug has been demonstrated in trials in holland to be of specific benefit to those with pre diagnosis profile above and has prevented them/ held off developing the ra.
They are looking to trial this in 25-30 places in the uk. There is a lot of keen excited interest in the rheumatology depts about this.
Dr Andy explained that they think that the 40-50% chance will become 20-25% chance or even less with the abatacept.

We were asked as a group to consider what factors would we think could encourage/ prevent us taking on this trial is we were at that stage ourselves
And also if we could imagine encouraging our blood relatives to give the trial a go when it comes.

So these are the factors we thought were important: how old you are and your stage of life ie career/ social life/family/ babies, how high your personal risk of developing ra is eg if its only 1 relative or several if the bloods only mildly positive, if the relative has low level auto immune illness, the awareness of ra as a whole is poor people might not grasp why this treatment is important, what would happen if you need to stop it, how psychometric data can be used to verify how stable patients are mentally to take on the information at this early pre dx stage.

The study is funded by the BMS and has to go through a few more stages yet of approval but is about 1/2 way through the process from what dr Andy was saying.
You'd have it by injection or IV - we think injection at home more convienient for people. And it's 1 yr trial with a 2nd year of follow ups every 3 months. proper double blind placebo or drug test. full disclosure in case of emergency etc. We asked for a snapshot to be taken at 3 yrs, 5 yrs to see if the patients did I fact develop ra.

It was very interesting
If you want to ask questions I'll try and answer and I hope the above info is right.
If I can't answer I can email across and ask.

I'd definitely go to something like this again :)

Lovely of you to give up your time and visit in the name of ra.
I'm shocked about changes in blood 14 years before developing ra - looking back for myself 34-14=20 years old was around the time of having thyroid diagnosed-graves (over active). Its interesting but in one way I think once you get one autoim illness - likely to get more.

I'm worried for my daughter, when I was diagnosed rheumatology consultant gave a ratio of her chance of getting it, said not to worry.
Not sure the gene factor in my family....think my dad because I don't know anything about him.

Its a fantastic idea for NRAS to include members at talks/study/our experiences - good that NRAS asks us for help.

Thank you Jenni with all your bits and pieces for going.

Jane
Xxx

Hi Jenni - thanks for posting all this interesting stuff. I wonder how it might affect my own son and daughter? Would they have a blood test to screen for RA factor and anti CCP? Very thought provoking research.

Sylvia xx

Hi Jenni

Thats is very interesting as there is a direct link in my family.

Me - My Dad & his Aunty - I do remember her when I was a child with walking sticks and remembering that she never walked very far; so I have often wondered.

There is 50 years difference in age between Aunty Nellie (her name) and myself. I was the first female born into the family after her; all my dad's generation were males.

Nobody else has been diagnosed; not unless my cousins are diagnosed in years ahead or their children.