Will there be a light at the end of the tunnel?

Hello everyone

I wrote last week that I now qualify for the anti tnf drug but have got to have a second high DAS score before I can actually go on it. I am still in complete agony, I can barely walk and luckily my work colleagues are taking it in turns to oick me up and take me home as I cannot drive at the moment as I can't even turn on the ignition.

Last Thursday I saw my GP who gave me treble the strength of a normal steroid injection prescribed by my rheumy nurse, it hasn't even touched my pain and has made no difference whatsoever. I'm now getting really depressed with this agonising pain and immobility, I'm normally a person on the go all the time. I rang my consultant yesterday and explained how I'm feeling and she still said that I have to wait until the 22nd Feb before they will do another DAS score. She has now prescribed steroid tablets which I shall get tomorrow. Just seeems so unfair that you have to be practically immobile and in so much pain before they are allowed to do anything.

Sorry for the moan but I feel that my life is passing me by at the moment, I'm 51 and have had this horrible disease for 13 years now and just wish I could do all the things I used to be able to do.

Thanks for reading

Love

Kim xxx

10 Replies

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  • Kim, I'm so sorry to hear you're having such a bad time. I agree, it's awful that you should have to suffer until you have another high DAS score. I hope you get the help you need soon so you can enjoy life again. Take care x x

  • Me too - you poor, poor thing big hug to you. TTx

  • ITs terribly hard isn't it. I've had joint pain with this bitterly cold weather - so cold waiting for the bus yesterday that it HURT! Anyway, this is to give you a big hug and to say that I do hope the anti-tnf works as well for you as it has for me. It sounds as though you will have these high scores, but WHY do they make us go through this?

    When you get the anti-TNF give it time, rest after the infusions. I started to notice a difference in the way I could move within about four infusions. But I think I'd have done better if I'd been able to rest.

    Big big hugs,

    Cathie

  • Hi Kim

    So sorry to hear that you are in so much pain. I think the system for getting biologicals is so wrong and does not take in consideration the patient themselves. As in order for you to qualify for the biologicals, they must ensure that your das score will be high enough. I suppose they make us jump through so many hoops due to the cost.

    I think the oral steroids should help, especially during this cold snap that we are having at the moment.

    Wrap up warm and I will be thinking of you. Hope you get some relief soon.

    Sci x

  • That is so horrid, but that light is there at the end of the tunnel...you just have the final bit to go before starting anti-TNFs. It's great that work colleagues are being helpful and hopefully there are others who can give you some extra pampering in the next few weeks. Hang on in there, and much sympathy. Polly

  • Hi your circumstances are truly awful and its about time they put you on anti tnf. I am an A.S. sufferer and like you had to be go through pain scores but when my Rheumy consultant realised that my anti inflamatories don't work sufficeintly he applied to NICE for funding to put me on Anti tnf. It does take a while for them to consider due to the demand and cost but you should get your drug. Once you are on it it does take some time to react.

    All the best

    Jezza

  • Hi:

    My consultant didnt give DAS scores any credibility when I brought it up a couple yrs ago. Got a new cons. now so may ask her!

    I was like you when I first got this 12 yrs ago - in tears most of the time. Took ages to get diagnosed officially and then more time before I got the meds that I needed. Every area of the country is so different! Had to get my GP to " beat down the door" at the hospital to get me in to see a consultant. Hoped things had improved over the years.

    When I have a lot of pain, I find heat pads help a lot - the sort you stick in the microwave - helps a lot. Then of course, packs of frozen peas for inflammation. The hot wax baths you can buy are very good for hands - I think they cost around £25 or £30 and good for hands, feet or anything else you can stick in there!

    We all do feel for you as we know something about how you are feeling. Fingers crossed you get sorted soon!

    Lynn x

  • So sorry for you, i know exactly what you are going through, there is this rule that you have to be assessed by 2 before you qualify for the anti tnf. They wouldn't even give me steroids whilst i was waiting for my second appointment

    as they said it may cloud my 2nd assessment.Why dont you ask gp to sign you off for a few weeks and just rest at least that way some of your stress will be lighter. Im sure the anti tnfs will work for you, im on cimzia but of course it takes a while to kick in.

    Maybe we should do a poll to find out how many people qualify at the 1st assessment but not the 2nd, maybe if it shows to be none or very few we can badger the powers to be to stop this crazy system and allow the consultants to make the decision on their assessment alone. I remember thinking it is soooo cruel to make someone suffer like this just to prove they are really THAT BAD!

    Big hugs, there is light at the end of the tunnel, but unfortunatly its a very long and dark one, xx

  • Hi Kim,

    I lurk around this site now just so I can harp on about my remission status! :)

    Exactly a year ago, I couldn't do very much, every joint was swollen, the social work dept sent someone out every morning to make sure I could get out of bed once my husband left for work and look after my 7 week old baby, I had to watch as a stranger sat on the floor playing, caring and changing her because I couldn't. I found some alternative and strange ways to cope with looking after she left each morning!

    In August I started an anti-tnf (enbrel), 4 weeks later I started feeling an improvement and on 23rd December I was given the das score of 1.35 (remission) the best xmas present ever! I remember both my Consultant and RA nurse that day smiling at me like a couple of proud parents as they were so pleased at the outcome :)

    I'm now back to work part time, manage to go to the gym and can run around after my 2 lovely and very lively children.

    I do understand, everyday I would count the hours until it was bedtime, couldn't wait for another day to go by to get me closer to the time I would be offered the enbrel. My baby gave me so much to focus on, without her I would without a doubt have been depressed.....

    I'm not sure how it's normally done but my consultant arranged my enbrel to start on the same week of my second DAS score so there was no delay; I'm sure the nurse mentioned that it takes 4-6 weeks to arrange otherwise, hope your team are as great as mine!

    Take care, hope you get there real soon xx

  • Hi Williby,

    So lovely that you are enjoying life, I remember when you were'nt able to mind the baby and were looking for positive stories. So glad you have lurked around like me and given hope to others.

    I hope you are enjoying your remission as I am, though I have been a bit uo and down, because of liver probs and ankle operation, but am a zillion times better than I was without Humira & mtx.

    I hope to be much better soon, the op set me back a bit, but feel a positive phase coming on.

    xxxxxxxxxxxxxxxxx Gina.

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