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Bill and Ben, the RA drug naming flowerpot men Options
Paul Barrett
#1 Posted : Friday, May 17, 2013 9:50:22 AM Quote
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Location: Hexham
I am about to start my anti TNF journey.

Saw my rheumy yesterday. Actually saw two in an appointment that lasted nearly an hour. They were very thorough.

They have decided I need to go on to Adalimumab. Hence the subject title - it sounds like a script from Bill and Ben - are they moonlighting for the drugs companies? Coming up with unpronounceable drug names? OK from here-on it's the brand name 'Humira.'

It sounds as though I will not have to wait too long to get started. The most significant hurdle will be getting the necessary blood tests completed (checks for TV and hepatitis status) and the MRI of my back. They need to take the case to the treatment committee, but they meet virtually every week. So I could be up and running in as little as four or five weeks!

But, man, this stuff is expensive! I saw on a website that the annual cost is something like £9295. That's a wage!
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Anne-P
#2 Posted : Friday, May 17, 2013 4:16:35 PM Quote
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Joined: 2/14/2011
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Location: South Hampshire
Hi Paul

Glad you had such a fruitful appointment. That's the stuff I'm on too! I looked up the cost when I first started - it's about £365 per injection!! I used to tell the kids it was £700 worth in the fridge! They thought it was quite funny! I should have said it was bill and ben in the fridge!!!

Anne x
suzanne_p
#3 Posted : Friday, May 17, 2013 4:42:06 PM Quote
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Location: Buckinghamshire
hi Paul,

Humira lady here as well .. don't ever recall the other name though, i expect it's on the box i recall a long name!

yes it's expensive about £10,000 a year .. but we've paid our due's along the years, that's why my funding took so long i think .. although other's have said their funding is already in place once the go ahead is given.

hope it works as well as it has for me,

you must start a blog when you start .. i did way back when and it was useful for me to re-read it.

Suzanne
Paul Barrett
#4 Posted : Friday, May 17, 2013 5:37:09 PM Quote
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Location: Hexham
So how long did it take for you to feel any benefits ladies? The literature says 2 - 12 weeks. And what's your relative position now if ere were to say that you were at 10 (most disabled) just before you started and 0 is pain free.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
suzanne_p
#5 Posted : Friday, May 17, 2013 8:39:28 PM Quote
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Joined: 8/25/2010
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Location: Buckinghamshire
http://www.nras.org.uk/m...aspx?g=posts&t=2977

hi Paul,

this is my Blog link above.

after the first month my CRP went from 86 down to 41

and my ESR from 84 down to 57

and then each month it gradually went down. i can honestly say i could feel a difference within the first month. now my bloods do vary monthly 21 months on, but i was told not to fixate on the numbers but more on how i feel and i do feel well. my ESR can be in the 30's and i still feel well, and again the same for my CRP. i do have some shoulder pain which is what first alerted me and as posted before i do have Osteo in both knee's. i have a slightly swollen left wrist joint and being left handed it i turn a tap wrongly or similar it can cause me to flinch but all in all i really can't complain. i haven't had a Steroid Depo injection for about two years now ( after the first 3 i came out in hives, only a few but it was enough to put me off ) and i don't need them now.

i was declared in remission which is in this thread i will have to go back and read when, will amend after i've typed this.

but now as i say 21 months on ... my last reading was CRP 1.4 and ESR 12 so i must be in total remission ( i haven't been seen for about 4 months go again in July now )

i was terrified at the prospect of starting this as i have been with all my RA drugs. i take 10mg Methotrexate and 2 x 200mg Hydroxychoroquine a day.

i do not take any pain killers which i am sooooo pleased about.

i had such a lot of support on here way back when i was so frightened, but i had to dig deep and tell myself i had to try it.

i hope this give's you some encouragement Smile

P.S. i was declared to be in clinical remission 6 months after starting it in the February having started it the previous August, but my numbers are lower now.

Suzanne
Sheila-R
#6 Posted : Friday, May 17, 2013 9:34:40 PM Quote
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That's brilliant news Paul, I'm an optimist so am always excited in the hope that new drugs give. Lets hope its not too long before you start it.
Best wishes
Sheila
Kathleen_C
#7 Posted : Friday, May 17, 2013 10:04:13 PM Quote
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Joined: 12/3/2009
Posts: 1,689
Location: Durham
Humira has been fantastic for me, and I started to feel some benefit after my second injection. Prior to humira I was using a wheelchair for any distance - I remember we went to Ireland for a week, and Nick had to push me about : this was in 2006.

I began humira in August 2007, and was able to "ditch" the chair. Yes, there is an occasional flare, usually in my shoulders or the TMJ, but mobility-wise things are considerably improved, even after almost 6 years. I "fly solo" with it, since MTX put me in hospital, and my consultant is happy with that as long as things remain as they are. I will probably need foot surgery soon, but the damage was done pre- humira, as far as we know, because all the time I was trying and failing on various DMARDs & combinations of DMARDs the RA was rampant and very aggressive.

Kathleen.

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