Not coping

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stlucia
stlucia Member Posts: 392
edited 7. Jan 2011, 17:22 in Living with Arthritis archive
:cry: I'm sorry I haven't been here recently. I have been finding coping with my RA increasingly difficult and I'm about to go back to work after a holiday and I am getting more worried and anxious about everything. The humira doesn't seem to be doing anything and I'm having my 3rd injection this week. I know it's very early days but I feel hugely disappointed and let down. It's all got too much, the pain, the tiredness, and I am feeling really sorry for myself. I don't want this stupid illness, I never asked for it and I just don't want it. x:( Thanks for letting me rant. x
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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh dear, poor you, I do know how you feel. It is so difficult not to get one's hopes up, but these biologics are not all they are cracked up to be, not by a very long chalk. Those for whom they work well are very much in the minority here: I have come across only two. It may need a little longer to get into your bloodstream/system, stlucia, we all react so differently to these things. I hope you are being closely monitored - fortnightly bloods at the very least. If it is working it should show soon, and I sincerely hope it does. I am thinking of you, and I hope things pick up soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
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    Hi stlucia

    Sorry to see this and do rant away any time love. It must be so frustrating and disappointing that the meds are not giving you some relief just yet. I can't advise but you do have my sympathy and I do hope things improve soon for you. Keep in touch if you feel able and let us know how you are when you can. I send some gentle hugs ((( ))) and really hope tomorrow seems a little brighter for you.
    Chris
  • Chinup
    Chinup Member Posts: 68
    edited 30. Nov -1, 00:00
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    Hi Stlucia

    I feel for you, I had my third injection last Friday, this week arthur is back with avengence so i know how you feel, lets hope it kicks in soon for you. (and me) and anyone else on it.

    Di
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Sorry to hear you are still not responding. I think we expect so much from these drugs, the rheumy nurses/doctors seem so poistive about them, and you believe it then don't you?

    I was feeling exactly like you for both enbrel and rituximab, I actually cried when my consultant told me the rituximab wasn't working. I had so high hopes.

    But it is early days for you yet and they can take weeks and weeks to work, and please remember there are several others to try if this one doesn't.

    Janie xx
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hi everyone, thank you so much for your kindness. Last night was ridiculous - I couldn't stop crying and I didn't really know why I was crying even, it hurt alot but I think it's probably just me trying to deal with the impact my RA is having. I woke up this morning to the dulcet (hmm!) tones of someone who is staying with us at the moment...at 6.20am....having been kept awake by them late last night and woken up early by them this morning especially when I am on holiday...then my knees and hand decided to join in with an almighty flare up heat, swelling and pain! :shock:
    DD, I am having 2 monthly blood tests....maybe I should give them a ring and find out if these should now be more often...oh dear.
    I need to find some energy from somewhere as I have got so much to do today and some of it involves driving.....sob sob sob.
    Thank you just so much for listening. It helps hugely.
    How is everyone else?
    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Two monthly? Blimey! I think I was on fortnightly from May 09 until January 10, then I dropped to three-weekly until June, then they said I could drop to monthly: I started the humira in July 09, they wanted fortnightly to build a picture of how things were to compare it to how things became. I am very surprised at the infrequency of your tests, I have to say, given the cost of these 'wonder' drugs, you think they would be wanting to check they are getting the bang for their buck. The variation in services is astonishing. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi stlucia
    I sorry the meds are not doing there job, not yet anyway, hopefully they will start to very soon.
    You rant away whenever you want, It will help a lot to get it off your chest
    Sending you loads of hugs ((((((((())))))
    Love
    Barbara x
    Love
    Barbara
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Oh Blimey! I was suffering badly last night too, my hands are burning as I type, god it gets you down doesn't it?

    For me, I've always had monthly tests, more frequent sometimes when things are so bad. I would just book yourself a blood test for as soon as, then you will know if the Humira is starting to work by your ESR and CRP levels are dropping? Although they are not always indicative of pain levels, it's good to know anyway.

    Janie xx
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    I'm sorry you were bad too last night. Sometimes it all just gets too much doesn't it. I nearly just cried at my boss when she asked how I was feeling pain-wise today....I'm 'on holiday' but I seem to be sitting at my desk trying to plough through a lot of work before a deadline...hmm I'm not sure how that works! My boss is sending me home soon to go straight back to bed.

    What are you up to today?
  • jillyb1
    jillyb1 Member Posts: 1,725
    edited 30. Nov -1, 00:00
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    Poor StLucia , know exactly how you feel as I was also on here having a good moany whine yesterday and the support on here really helped me . I hope you will soon feel some benefit from your humira , I expected the pain to ease when I started on it but no chance of that ! However I do have more movement in my joints than before so maybe you will also get some good results after a few months . Hope you will be able to cope better as the day goes on . Jilly
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hi Jilly,

    Thanks for your support. It really does help just talking to people on here and knowing that you aren't the only one having a horrible time, and knowing that it is ok to not cope some days!

    As much as DD tried to warn me, and as much as I tried to keep my feet on the ground, I had in my head that I would be better by Christmas (this was not helped by the optimism by the nurse practitioner at the clinic!!) and I almost thought that I would be better in the first week....then I thought oh maybe I'll be better by the second week....third?....fourth?! Hmm and the dissapointment gets great every week when I realise that I'm not better. Friends and family keep asking if the Humira is working yet.....I'm going to get a t-shirt printed with the words... NO IT ISN'T SO DON'T BOTHER ASKING!

    Would you like a t-shirt too?!!! Hee hee we could start a trend!
    How long have you been on Humira?

    x
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    2-12 weeks for it to take effect so give it a little more time. It will need to get into your system. I had 2 weekly blood tests at the start so they can see if anything is not as it should be.
    Oh dear I must be one of the 2 DD was talking about. But now I have a cold I am suffering without my humira.
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Yup, tkachev, you are one of them and it is good to know that this stuff does deliver what is promised. My inflammation levels dropped rapidly with the humira, indeed they have stayed in single figures, and my husband says I do move more freely for the few days after the dose (I don't notice any difference) but the pain has NEVER gone, it's constant and worsening, so the strength of the pain dullers has increased commensurately. I for one would appreciate a little more honesty from rheumatologists about the effectiveness of these drugs, I think they should give a more balanced view of what they can achieve. I was told I would get my life back. What a big, fat lie that was. That is something you say to someone once they have their life back. Simples. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,489
    edited 30. Nov -1, 00:00
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    Oh Stlucia

    I am so so sorry you are having such a shift time and yuou on bl**min holiday too :evil

    I do hope the humira will suprise you and help at least a little soon.

    Does your visitor snore??? :???: I get confused easily :oops:

    An Janie - you too? I do hope you feel better soon :sad:

    LOve and hugs from a rather helpless Toni xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
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    Hi St Lucia,

    hang on in there girl! I was on Humira for 5yrs and for me for nearly all that time it was an effective drug... but it did take time to show the benefits. :wink:

    I had to stop it as my body produced antibodies which stopped it working.... nothing to do with the Humira ..just the immune system working overtime.

    So I hope you will see an improvement soon.

    Iris xxx
  • jassie
    jassie Member Posts: 17
    edited 30. Nov -1, 00:00
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    Hi St Lucia, I'm so sorry that you're having a rotten time and at least this is somewhere where you can rant a bit. While everybody's pain is different I would think everyone on here has at some time thought 'Why me?' and 'I can't cope' so there is a lot of understanding. I do feel for you at this time. You said that you were going back to work and, for me that was allways a trigger for depression. Are your employers not helpful? Is there someone there you could talk to? Your friends and family may be getting on your nerves, but at least they care enough to ask, so do hang on in and I'm sure better days will come soon. Best wishes. Jassie.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    Hi, Sorry the meds arent working the way you expected them to. I am not on humira so dont know.....but hope they start to work soon
    Love
    Hileena
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    Hi Stlucia,
    I am so sorry that you are having such a rough time of it again.
    Maybe given a bit more time the Humira will start to kick in. I know things tend to take time with me to work but I have no experience with the anti- tfns. So I’m not much use to you.

    You are a strong lady and you will get through this. Remember that.

    Get the chocolate bar out, just for medical purposes of course. :wink:

    Lv, Ix
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Thank you all so much. I managed to do my own injection today without relying on someone else doing it so that is a positive step. I've been asleep on the sofa all evening and now I'm going to attempt sleep in the right place!
    x
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    Hi Toni,

    Fortunately he doesn't snore and this visitor is much less hassle than the last long term visitor!

    x
    frogmorton wrote:
    Oh Stlucia

    I am so so sorry you are having such a shift time and yuou on bl**min holiday too :evil

    I do hope the humira will suprise you and help at least a little soon.

    Does your visitor snore??? :???: I get confused easily :oops:

    An Janie - you too? I do hope you feel better soon :sad:

    LOve and hugs from a rather helpless Toni xx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Stlucia,

    Its good you did your own jab flower an sometimes small things can help to get it all back into proportion a bi.

    The pain thing is horrible and drains you so much and is there anything else you could be taking to help while the drug gets a chance to work?

    I hope you have got some decent sleep and that tomorrow is a better day for you. Hi to the skivvy and he still has fences to fix don't forget :wink: ((((( ))))) and hang in there flower. Cris xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 7. Jan 2011, 08:54
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    Well done to you for doing your own humira: do you have the pre-loaded pen or the needle thingy? I have the burgundy and grey pen, it's very easy to use and I do like Mr DD there for moral support, 'cos that stuff can pack a punch sometimes! I thought it was the preservative that stung but on re-reading the leaflet, it doesn't have any, so it IS the stuff. I have done a couple of them on my own - usually when fired up in a lovely mixture of temper and resentment, but it's not a joyous experience, in any way. I hope you slept well, and that things are a little brighter for you today. 'Tis Friday, the week-end soon - make sure you rest as much as you can and divert your attention in wondrous ways - a good book with a box of chocs, shopping, whatever - pop across to the Holiday Inn for dinner! Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    stLucia I hope you've managed to get some restoring rest and are a little better today. Don't ever apologise for ranting, we all need to do it every now and then and here is a very safe place with lots of caring and supportive folk to help. Well done giving your own injections, gives you a sense of being in control somehow does'nt it. Hope today is a better day.
    rita
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    Hi St Lucia
    Hope I didn't come across as unsympathetic. I hold my breath waiting for good news and feel as disappointed as you do when the pain does not subside.

    I was never told how much the humira could help me actually so I had no expectations, methotrexate was meant to be my wonder drug but each dose had to be increased as the relief only lasted a little while, until at 22.5 mg they decided it wasn't going to help. I felt really depressed at that stage.

    Good luck St.Lucia and remember they are monitoring you and if youaren't showing an improvement they will move you on to another med quickly.

    E x
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • stlucia
    stlucia Member Posts: 392
    edited 30. Nov -1, 00:00
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    You're so lovely, thank you for the encouragement. I am still on the Mtx and it's 'worn off' over the last 10 years or so. I hope that the Humira will do *something*. I am pleased that I managed to do it for myself yesterday - the box comes with stickers to put in your diary - my husband has just stuck one on me and said "well done you were a brave girl, have a sticker!" ho ho ho it made me chuckle!

    x
    tkachev wrote:
    Hi St Lucia
    Hope I didn't come across as unsympathetic. I hold my breath waiting for good news and feel as disappointed as you do when the pain does not subside.

    I was never told how much the humira could help me actually so I had no expectations, methotrexate was meant to be my wonder drug but each dose had to be increased as the relief only lasted a little while, until at 22.5 mg they decided it wasn't going to help. I felt really depressed at that stage.

    Good luck St.Lucia and remember they are monitoring you and if youaren't showing an improvement they will move you on to another med quickly.

    E x