So is it bye-bye humira?

dreamdaisy
dreamdaisy Member Posts: 31,520
edited 31. Oct 2011, 05:59 in Living with Arthritis archive
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
Have you got the despatches? No, I always walk like this. Eddie Braben
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Comments

  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
    Dammit!!! Just when you think you are getting somewhere....Grr I feel your frustration...

    What's the next step then? xxx
  • jillyb1
    jillyb1 Member Posts: 1,725
    edited 30. Nov -1, 00:00
    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
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    :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..
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    The rollercoaster sure gets tiresome!!! :sad: I wish you a restful evening.
  • mp1952
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    Gosh, I am shocked DD! That is very worrying.

    Marion x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    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
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Poppyg1rl
    Poppyg1rl Member Posts: 1,245
    edited 30. Nov -1, 00:00
    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
    'grá agus solas'
    'Love and Light' translated from Irish. X
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    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
    mp1952 Member Posts: 425
    edited 30. Nov -1, 00:00
    I am still lost for words too DD..

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

    Take care.

    Marion x
  • claircoult
    claircoult Member Posts: 62
    edited 30. Nov -1, 00:00
    (((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
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
    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
    cacyhi Member Posts: 150
    edited 30. Nov -1, 00:00
    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
    CAROL (Cacyhi)
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
    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
    There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan



    Theresa xxx
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    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
    bertyboy Member Posts: 1,860
    edited 30. Nov -1, 00:00
    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
    I know i am a lady ,all life is a journey xx MAY xx
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    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
    val
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    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
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    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.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    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.. :wink:
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • jillyb1
    jillyb1 Member Posts: 1,725
    edited 30. Nov -1, 00:00
    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
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • dachshund
    dachshund Member Posts: 9,119
    edited 30. Nov -1, 00:00
    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
    take care
    joan xx
  • jilly
    jilly Member Posts: 503
    edited 30. Nov -1, 00:00
    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
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi DD

    I am pleased also to read that you are feeling a little brighter today :grin: ...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