So is it bye-bye humira?

dreamdaisy

I am sad to report that my inner 3 year old is alive and kicking (unlike the 52 year she inhabits who is only alive - her kicking days are long gone. :roll: ) I need a fresh supply of dummies to spit and would one of you kindly refill my pram with my toys? Your sulky brat of a friend, DD.

frogmorton

Quel dommage DD :shock:

have thought about this one and my opinion, (for what it's worth) is.....

You should do the usual...

forget it for a bit dust yourself off and lick your wounds for as long as you need....

and then chat to Mr DD and decide what you two think is best (pick your moment carefully though and try not to clash with any televised ball games .

IF the rheumatologist and you think coming off the meds is an idea then you could give it a cautious go.

No rush.

In the meantime plenty plenty hugs from moi

Toni xxx

frogmorton

ritwren

I'm shocked and annoyed for you with this news. But all is not yet lost. Hopefully your consultant will be able to help sort things out. My fingers are crossed for you and I'm sending big hugs and good vibes. Do try to let us know how it goes. We're all with you in thoughts.

kellerman

Hi DD,
This is sickening,but not surprising.It's the way things are at the moment.

My GP would only prescribe AA for my OP because anything else was too expensive.But on Friday 1st consultant appointment he prescribed an alternative,different PCT.
Health seems to be secondary to money but also depends on where you live.
The whole thing is a farce.
I know you are a strong positive person,stay strong,stay positive.
Have a good night. May

CJHunter

Hi DD, not supprised you have had enough of the rheummy lottery. You know i know the feeling and it gets to the point when you feel like saying stuff it.

Take time to consider how you would be without and if it seems the right thing then do it.

Hope things work out for you hun.
Take care.
Clare xx

psyart

Hi DD ~ its been a long time since I wrote in but felt I needed to say something.

Big cotton wool hugs firstly as this is a major jolt down the c@@p road but you are a strong woman and you will decide what is best for you when you are ready as only you know you ~ hope that makes sense :?:

I saw my consultant in August and out of the blue he has decided that my condition is now dominated by the fibro so he took my of my meds for the PA :!: :?: Stopped them straight away :!: How did I feel ~ like **** to be honest ~ as if I had been stepped on and ground into the ground :!: Now why ~ I asked myself ~ did this happen ~ MONEY. I have been fobbed off ~ I think he looked at my notes and thought ~ she's not going to get any better, but she's not serverealy disabled yet so lets save money here. The fact that I have been on horrid, horrid, horrid meds for the past 4 years ~ 16 months on methatrexate ~ self injecting, suffereing from at least 5 days of nausea a week, doing all sorts to my body which could hav a lasting impact ~ this means nothing. This means that I am nolonger suffereing from PA ~ by some type of magic its gone and I am now ONLY suffereing from fibro.
so I think the money thing is every where ~ and as some one has already written ~ its not about our quality of life anymore ~ its about where they can make the best saving on money to pay the people at the top who have very little idea of what a diabilitating illness is really like to live with :x

sorry ~ have gone on a bit

take care and I hope what ever happens ~ its the right choice for you and Mr DD

Louise xx

dreamdaisy

Hello psyart, you poor thing - you have been going through the mill haven't you? I had no idea things were/are so rough for you and I apologise for that. :oops: I think your health authority is known for being far from what it should be and yet somehow they seem to be able to get away with it - odd that, isn't it? Where are the watchdogs and ombudsmen in your neck of the woods?

I am pleased to report that everything below the ears is twanging away today, with the exception of my very broad hips. Moving will be kept for emergencies only (ie tea making, coffee making, breakfast making, lunch making, fetching the Telegraph and a fresh supply of sweeties for you-know-who, dinner making and all the washing up that the day brings. Never mind, eh? This is only what the rest of you do all the time as you take care of your families, it's about time I learned a little about the realities of life with arthritis, yes? DD

julie47

Morning DD

sending more hugs (((((((())))))) and hope that today isn't gonna be too bad for you. Take good care my lovely.

I did smile at the pram Toni sent you, and her advice is spot on. Good one Toni

Juliepf x

frogmorton

Poor Louise too!!

Gosh l hope we are not going to see more of this.

Would hazard a guess DD that the person YOU are waiting on....may well be a bit more demanding than my 3 kids one cat and one husband

Julie - perfect wasn't it? Well DD did ask

Love

Toni xx

dreamdaisy

I love my pram. It's beautiful, suits me to a T and I am still firmly sat in it, dummy-spitting and toy-throwing for all I am worth. I like being three. It suits me.

elnafinn

At three years old DD you would not stay in the pram but be charging around throwing your toys everywhere, tipping all your books on the floor, tipping everything on the floor, throwing them one by one as far as you can, beating the living daylights out of your dollies and teddies and yelling and shouting at the top of your voice, screaming, jumping up and down on the furniture, throwing yourself on the floor and generally being very contrary and horrid. I bet you would love to do all that. That is Lola on a bad day - not really but she can show her temper/annoyance very well.

Love
Elna x

dreamdaisy

True, but having done that I would then leap back into my pram and revert to being a baby. It's the only way I can cope at the moment!

elnafinn

I would love to come over to babysit?

Elna x

mig

Gonna have a lot of babysitters.Mig

elnafinn

I'd really spoil you, what would you like for your lunch today DD?

Elna x

dreamdaisy

Fish fingers, chips and peas and a large glass of chardonnay, please nanny elna and nanny mig. (I'm a very unusual three year old. :roll: )

elnafinn

OK. If you are a good little girl and eat and drink all that up, what would you like for puds?

dreamdaisy

Puds? Ith-cweam and thchoclit, ith-cweam and thchoclit, ith-cweam and thchoclit. Pleath.

jillyb1

Suggest some baileys , ( just half a bottle ) , as sauce for the dessert ; most flavoursome . Am I right in thinking , just a few more sleeps until your guest goes back home ? Rest and alcohol advised . Jillyb

elnafinn

Lunch at 12 o clock then DD and afterwards a little nap as you will be so sleeply after that great feast!

Elna x

elnafinn

Oh goodness, you have not mentioned your mother lately. Has two weeks really gone by since she arrived?

Elna x

mmarshall

DD

Sorry to read your post.
It is terrible that you have been treated like this.
You would think they could have waited until the consultant was there to discuss this with you and inform you on what they are thinking about doing next.
You put your trust in these people and they let you down.

I am also waiting to see the consultant in December as he put me forward to start Enbrel and while getting screened I informed them that my sister has just been told that she has MS. I was told that the consultant would need to be informed of this. I did not know that my sister having MS would affect my treatment. I do understand now the implications.
So was back at the hospital on Tuesday to get the results of the screening but no word from the consultant. I was told that he wants to see me face to face to discuss what happens next but have to wait until my scheduled appointment in December.
At least I will be able to discuss my options with him.
There is no way I would chance starting the treatment if there is a risk of getting MS it is bad enough with RA.
Just now my RA is out of control, they cannot increase the MTX as my liver count goes haywire, they cannot increase the supha as my WCC is too low. I am in a lot of pain but anyway enough about me.
Please keep strong, you do seem like a really strong woman and I wish you well.
Thinking of you
Mary

dreamdaisy

I'm still feeling bewildered by it all, and truth be told I have been sitting here grizzling with pain and confusion. It is now time, however, to wipe my eyes and fix a rictus grin on me mush as I am taking mum up to the Co-op.

I have no complaint about the hospital as such, the rheumatology department (once convinced that I had to join in their game and not orthopaedics') has been very good to me. I cannot help the fact that I am 'treatment resistant' as my consultant terms it (or based on cat protein as a lovely GP put it - ie the mouse-based stuff will never work!) but it's the suddeness that has gotten me, the total U-turn in their opinion. I am very upset. You'd a thunk I'd a learned a thing or two over the past fifteeen years, wouldn't you? :roll: Strewth, I'm annoyed with me. DD

PS The Arthritic's Prayer has been muttered a few times today - especially the 'Forgive me my temper, as I forgive those who temper against me' line!

cthornley

DD
sorry to hear you are having to go through this
My thoughts are with you and I hope you find a way through it soon
Sorry I can't help more
Chrissie