Decision Decision Decision

[_andy_]

after a long journey its looking like ive finally being acepted for the anti tnf treatment .. after various assessments ,, 3 rheumy nusre assessments , 2 psyhio assessments and one rheumy app .. at 3 different hospitals the time as arrived where i after make my mind up which one of the 3 to pick ... i find this strange how the decision is left totally down to the patient... the 3 in question are - etanercept ( enbrel ) , adalimumab ( humira ) and golimumab ( simponi ) ... making matters even more confusing , ive asked every time ive seen a different medical expert ,, what their views are on the 3 ,, my GP ,, said that simponi ,, is showing some very good reviews ,, my rheumy nurse says the humira is the better one , out of the 3 ,, and my rheumy says enbrel is the best one .. hmmmmm ...

ive spent along time over the last few months doing research on all the 3 ,,ive found very mixed reviews and pros and cons with them all ,,

how am i going to reach this decision ??? ,, i first thought pick the one , that you can pronounce and atleast spell .. this could save some embarrassment later ...

or maybe ask the question on here ..?? or will this just confuse me even more ..

in the end ,, i found the answer ... after taking on board ,, all the advice from the rheumy / rheumy nurse / and doctors .. all the studies and research .. i used a very technical solution ..... called .... Eeny, meeny, miny, moe ... it came out enbrel ...

[Hidden]

Lol Andy, you made me giggle. As good a way as any especially after so many conflicting views.

Hope it works for you.

Mary

[helixhelix]

Glad that you're now trained in the proper scientific method of choosing which drug will work best. Saved you £150 for a private consultation with a top rheumy anyway.... Px

[watson3]

Hi Andy

Thanks for that question. And the answer fits the expertise of some experts. Ha ha...

On a more topical note. Looks like I'll be joining to anti tnf's group after Christmas.

I have been given the same leaflets to study over Christmas. Would have preference for a stuffed Turkey myself.

Like you I have read mix reactions to all of them, so in the end I supose it depends on how the drugs work for you as an individual.

Did your choice come out on top of the research?. Or was "ip dip sky blue it is not you......."

Best wishes

Carole

I can feel a poem coming on I'll dedicated it to you.

[watson3]

Andy has a problem

No.... I don't mean like that

He's got to choose a hat

Well not a hat like that

Not a hat you wear

Well not like that

It the hat you choose

That will get you back

To the way you used to be

The hat that makes him just like you

So he can go and enjoy

His bike

And ride and ride

Without the pain

That causes him to refrain

From his pleasure and delight

The pain is a daily fight

Of not choosing the right

Hat

That hat is the problem

,

Will it be the one

He injects, swallows

Or wears with pride

So he can enjoy his ride

So will it be

? ENBREL

? HUMIRA

? GOLIMUMAB

I hope he takes his time to choose

Cos whatever the choice

He cannot loose

So here's to you

Reve up those gears

Will place sweet music

To your ears

The choice is not your alone

Not..... while NICE

Sit on the throne

But whatever you get

I wish you well

Get on yer bike and ride like hell...........

Good luck Andy

[_andy_ in reply to watson3]

awww carole ,, thats lovely ... thank you xx

[earthwitch]

That method of choice is probably as good as any! I think if I had a choice the only thing I would be looking at is how often to inject, whether it was a pen-injector or pre-filled syringe, whether it was home injection or infusion in hospital - and of those which would be the easiest to manage given my current work and social life.

[Hidden]

Good news Andy is could change your life!. how about put all three names in a hat?? lol!

Think more is known about enbrel or humira than simponi .. in my dreams when I researched them I chose enbrel not offered any my NHS trust penny pinchers .

[Hidden]

Don't be too disheartened if you end up with something different. I was told that I was going to have another type of injection, on delivery it was Enbrel, phoned the hospital and was told that all the medics decided this would be better for me rather than the other one. I am doing fine on it, sometimes they do know best!

[Hidden]

That's great news Andy! And actually I think it's quite a sensible thing to get patients to choose which drug to take because it forces us to do our research and learn more about the disease we suffer from in the process so it's kind of empowering. I chose Hydroxichloraquine to take with MTX after looking them all up and reading the info on NRAS about combination therapies. Enbrel is probably the one that I'd try first and if it doesn't work then hey.. you've done your research so can try the other two which you'll be able to play eeny meeny with again?! Here's hoping the enbrel makes such a difference to you that you don't have to. Tilda xx

[_andy_ in reply to Hidden]

i never even looked at it ,in that way ... yes !! i can see how it is a sensible thing to do ... i believe with imflamatory arthritis ,, the diagnosis is so difficult , with all the variations the rheumatologist needs the patients input .. im sure that helps him / her too .. maybe in some cases the rheumatologist doesnt welcome a patients input .. but im sure it helps if the patient as some knowledge .. xx

[Hidden]

Hi Andy - yes I think we need to work with our doctors if we have chronic conditions - a partnership of sorts is good so we take some responsibility for getting ourselves better with their help and support. However this doesn't really work if you're in my shoes and have no contact or relationship with the consultant unless you do all the running yourself. You can end up self medicating rather than making educated decisions with the support of your consultant. I think its great when people learn about all the different tests and drugs and really sad when they just expect their doctors to make decisions without involving them. As you say rheumatology is to complex for this to work well and it leads to over dependant patients and arrogant and patronising consultants too.

Ultimately they are the experts so it should be a good balance as it sounds like you've got Andy. Well done! Tilda x

[Hidden]

Hi Andy - yes I think we need to work with our doctors if we have chronic conditions - a partnership of sorts is good so we take some responsibility for getting ourselves better with their help and support. However this doesn't really work if you're in my shoes and have no contact or relationship with the consultant unless you do all the running yourself. You can end up self medicating rather than making educated decisions with the support of your consultant. I think its great when people learn about all the different tests and drugs and really sad when they just expect their doctors to make decisions without involving them. As you say rheumatology is to complex for this to work well and it leads to over dependant patients and arrogant and patronising consultants too.

Ultimately they are the experts so it should be a good balance as it sounds like you've got Andy. Well done! Tilda x

[Victoria-NRAS Partner Moderator NRAS]

Hi Andy

This decision should not be left solely to the patient to decide, but sadly it often is! Your rheumatology team are supposed to involve you in the decision making, as part of what they call 'shared decision making' but sometimes this seems to go too far the other way, with you making the decision without their input.

The reason you're getting such differing opinions is that there's really no right or wrong answer here (which hopefully makes you feel under less pressure). Neither you nor your rheumatology team can know in advance which of these drugs would suit you best, so you can use any criteria you like for making the decision. Some might go by how long the drug has been around and how well-established it is, while others might look at how often it's taken and what fits best with their lifestyle.

The drugs have not gone head to head as far as I'm aware in studies, and as ever with these drugs responses will vary between individuals.

So, however you make your decision I wish you luck with it and fingers crossed it will be a good drug for you!

Kind regards

Victoria

(NRAS Helpline)

[_andy_]

hi victoria

thank you for your kind support .. im gutted your not taking my technical solution on board ,, i thought this would help choosing anti tnf abit easier for everyone ..

my rheumatology team did make an input ,, especially my rheumy himself , who did take abit of time to go into a few details . i cant complain ,, im given excellent service and care from my rheumatology team , just abit of a shock when your told to pick a med ...

although , has you will be aware ,, any appointment with a rheumy ,, you dont have alot of time to go into any great details .. one thing i do remember him saying ,, is if we dont find the right one first time , we will try another ,, so dont dwell or worry about it to much .. its a case of finding the right treatment that works for you ..

GP or rheumy nurse ,, i cant remember .. did say that some studies have just being done on the new one ( simponi ) that are very good .. in fact out standing ..

many

thanks

andy