So is it bye-bye humira?

dreamdaisy

I've just returned from rheumatology and they have suddenly changed their tune over the humira. From professing great delight over the wondrous bloods month ater month and repeatedly squawking 'They prove it's working!' at me they are now seriously querying whether I am indeed giving them value for money as my arthritis has spread and is indeed spreading. The nurse I saw today is passing my notes over to my consultant (who returns from breeding leave next week) and I am to await her decision.

They are in trouble with the PCT and are having to clamp down on who gets what. I am sick and tired of the whole damn thing today. Dammit, dammit, dammit. DD

stlucia

Dammit!!! Just when you think you are getting somewhere....Grr I feel your frustration...

What's the next step then? xxx

jillyb1

Oh , DD , they sure like to mess you about don't they ? What a palaver , my RA ( and OA knees , hips ) is also getting worse but I was told that's due to stress from pain while waiting for new bits . Surely , you're in the same position of putting up with it all while they decide if and when to sort out your knees , not promising when looking for good blood readings ! Hope you hear some better news next time you go back . Jillyb

tjt6768

:evil Bloody money... It should not come down to money... If they stop wasting money on stupid things and treating all and sundry for stupid cosmetic bull.... The ones who really deserve looking after such as yourself are however shoved to the back end of beyond...
Oh I'm sorry that they are messing you around hun.
I hope that she gets back to you soon..

Bugger bugger bugger..

suzygirl

The rollercoaster sure gets tiresome!!! :sad: I wish you a restful evening.

mp1952

Gosh, I am shocked DD! That is very worrying.

Marion x

dreamdaisy

I'm angry. The suddeness with which they have moved the goal posts grates hugely - is it my fault they are hugely in debt? I think not. I KNEW the damn stuff was not living up to its greatly over-rated promise but they were so PLEASED by the lovely blood results they cared not about the on-going pain and occasional swelling: it's further proof that they who live not with this dross have absolutely no phacking idea about any of it. I'm furious that I was so feeble for five years in believing a stupidly ignorant GP, whilst watching my left knee grow and grow and grow, I have since religiously played the rheumatology game (with the occasional foray into orthopaedics) and followed their ridiculous meds programmes for ten years but why? What was the bloody point? I honestly don't know. I suppose I can take comfort in the fact that I've helped to keep rheumatology staff in employment and bolstered the profits of various drugs companies to boot. I'm a seething DD. :evil

Poppyg1rl

Incredible...just when you think the NHS can't get any worse.
There's nothing I can say DD, except that I'm so sorry my friend, it's just mind boggling how much our care is being affected by all these cuts.
Love and hugs DD (((((()))))) Xxx

julie47

DD I too am lost for words that they should just suddenly decide that they are taking away the humira.
I hope when you next see the consultant they will try you on a different med. It shouldn't matter of the cost, YOU ARE WORTH IT.

I have my fingers crossed that they find a solution

In the meantime a big hug (((((((((()))))))))) and keep your lovely chin up

Love Juliepf x

mp1952

I am still lost for words too DD..

If i have any good ideas I will let you know..

Take care.

Marion x

claircoult

(((hugs)))

I'm not surprised you're so cross, I don't know what to say but I hope they sort something out soon.

Clair

elnafinn

Aw, DD, I am devasted for you. No wonder you are so angry and furious and all the other emotions that I am sure you have been through today. As you say, it is nothing to do with you that they are debt. I hope your consultant will be on your side.

Hugs
Elna x

scorpio

DD

i am so sorry to hear the **** you are enduring at the moment; i suppose each hospital is different, but this is no excuse - i always worry they will halt my meds due to me enjoying a tipple

i hope everything works out well for you

try and stay positive

chris

cacyhi

Although I dont currently see a rheumatologist ( only ortho at the moment) I am horrified by the inconsistencies about who can get what and where. You would think that anyone in the country would be able to have access to the same treatments but apparently that is not the case - I am only just realising how individual to health trust areas and hospitals it now is to be offered certain treatments, therapies, ops. It shouldnt be about money - if a drug is available, then why cant you have it? I know there has been a lot about this concerning cancer treatments in the papers recently and obviously it is true in lots of other circumstances as well.

A few years ago, the main factor on deciding where we lived was about the quality of the schools in the area, now I need to think about the quality of healthcare in a certain area if I decide to move!!!!

Sorry its been such a distressing day for you DD x

theresa4

Bleeding rotten of them I hope they are planning a new treatment for you dd. it's not on but despite all their claims they have no idea what it's like to live with Arthur. Unless you have it you can't understand I know I had no idea prior to Arthur moving in on a permanent basis. But treatment shouldn't be down to cost especially with people like you whove managed to keep working I've said before I'm really lucky as my rheumatology dept is a centre of excellence and runs the trials so I've had 4 biologics and it's only cos I said I want a break I'm not on no 5. It's a postcode lottery really :x
Good luck dd x

suzygirl

DD, wish I could make it better for you. Is it true it is a true mass of emotions in dealing with this beast and I have not as much expereince as you.

I am thinking of you x

bertyboy

WHY OH WHY can people not get the treatments and meds that are so needed , it should not be like this , i do hope you can get sorted DD x

valval

dd this is second time of reading could not put word together last time with out odd swear word slipping in lol. i am so sorry do hope they find some help for you soon thinking of you val

dreamdaisy

I'm feeling a little better about it all this morning, I have to say. I cannot be too cross with them, this was after all my third bash at an anti TNF and I should be grateful that I was given those opportunities, plus the fact that I have had wondrous bloods since July 09. (A less than wondrous life has gone on alongside that but hey, who cares? I don't.) I know that the next option is gold, as discussed with my consultant earlier this year, but quite honestly I don't want to get back into the faff of having to go to the hospital for treatment. Been there, done that for so many years, I am tired of it all. If they decide to take me off the H (and possibly the M too) then I have decided to take a holiday from the whole damn lot of it. As I said, I have done everything they have asked of me over the past ten years, including at least six years' worth of fortnighly bloods, so **** 'em. They can keep their filth and poisons to themselves for a while as I want a break and I give not one damn about what the arthritis may or may not choose to do. It's not going to go away, it may well get worse but as nothing so far has stopped that from happening (although the meds may have slowed it) it matters not. It is what it is, it can do what it will do, I can live with it ('cos I have been). DD

dreamdaisy

I've forgotten my manners, I apologise. :oops: Thank you everyone for your messages of support, they are much appreciated. I am an unhappy DD, I won't deny that, but that will pass as all things do.

tjt6768

Bless ya DD... This has all taken a heavy toll on you, I wish I could do something to help you with it..

Ra send hugs and good vibes..

jillyb1

Oh , DD , do hope you're not too peed off about it all ; but as you so rightly say , if you need to cope without the ghastly meds then you'll cope . You have before and will again , but think very carefully and discuss with Mr DD what's best for you in the long run . Wish could say or do something to make you feel better , but please accept hugs from me , Mr Jillyb and Betsy dog . Jillyb

elnafinn

Dear DD

It is good to read that you feel a little better about it today. There is still the chance that your consultant will agree with you that you should stay on it, isn't there? You are a very strong woman, DD and I am sure you will be able to manage this as you have managed all the other blips you have had in the past. I don't quite know how you have done it, but you have. You have my full admiration and top marks for perseverance.

Hugs
Elna x

dachshund

Hi DD.
i'm sorry you are being treated like that you hae enough to put up with i hope they change their minds.
take care ((((((((DD))))))))
joan xx

jilly

Hi DD, I am so sorry that they are messing you about like this , as you say they dont seem to realise they are making someones life very hard and painful , I do hope you can get this sorted . I know you are a strong women but sometimes they do manage to grind you down . Thinking of you and sending you a hug ,hope you get some help from them...jillyx

julie47

Hi DD

I am pleased also to read that you are feeling a little brighter today ...but....I am worrried....that you will take the option of giving the meds a rest for a while. :???:
Please....if he gives you the option of the gold, try it.

sending hugs ((((()))))
love juliepf x