Emergency rheumy appt

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janie68
janie68 Member Posts: 1,186
edited 2. Jun 2010, 07:21 in Living with Arthritis archive
I am at my wits end really. I started enbrel in October, didn't start working until February but then for the past month, I have been suffering terribly, hot swollen joints, can't cut up my food, can't walk, can't sleep etc etc. So I went to see biologics nurse on Monday did my DAS score again - 7.2 I think. So I had kenalog im injection which still waiting to kick in.

But it seems that the enbrel is not working so the next one will rituximab (sp) if consultant agrees. I am so down about it all, I had gone back to work but I am now off again. It's just so demoralising and I hate my body, my RA is so much worse than 3 years ago. Then you have to wait for new meds to kick in so I will be like this for a good while. I hate it.
Sorry to go on but I need your wisdom and support, my hubby is great and my 11yr daughter, my Mum and sister couldn't care less, chin up is what they say. Great. Makes me feel soo much better, not. But then they've always been the same.

Sorry about me ranting

Janie

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  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
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    janie not suprised you ranting any one would people do not understand the pain and stiffness and all that goes with it sorry meds are not helping and you will have to start again but at least you have us now .you are not on your own we will be with you wether you want to scream moan or rant (((hugs))) to help keep you going val
    val
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Thank you Val

    that's is very nice to hear. I am trying to stay positive, at least I see consultant on 9 th July and biologics nurse again on 21st June.

    Janie
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -1, 00:00
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    So sorry you feel this way and your mum and sis unsupportive. Its really hard when you have to restart drugs and wait the 3 months for them to maybe work. I do hope you get it sorted soon and find the drug that works for you. People can seem really thoughtless but they just dont really understand what you are going through.

    Im like you between drugs and have all the problems you have with dressing, walking eating etc.. and not working now for 2 years :roll:
    On the upside last week I did some gardening includign driving to my local garden store, baby shopping for my soon to be born 1st grandchild :D, clothes shopping for me :D although ended up buying on line as I either didnt like stuff or they didnt have my size :roll: I paid for each thing I did for a day after but felt good, this week Im a little immobile as the pain is horrendous and stiffness following short rest periods. Instead of letting it get me down this time I look at my beautiful planters with the colours starting to bloom in my garden and think I did that. Its really helping to keep my spirits up. :D
    As for the people who dont understand and have not an ouncxe of compassion I say **** em!! I hope they are never given a visit from arthur but they may want to remember I never invited him either :wink:

    Much love and hugs ((()))
    Theresa
    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
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
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    janie68 wrote:
    Thank you Val

    that's is very nice to hear. I am trying to stay positive, at least I see consultant on 9 th July and biologics nurse again on 21st June.

    Janie

    positive is good it hard sometimes as arther can get to you but the more positive the better and smile when you can does make you feel less down. i am back in june to see what they have to say should have been march lol but they canceled gave me one in may knew would be away so have ended up till june do not mind as meds working and they at end of phone if need be lol good luck hope things go well sure they will it trial and error to find meds that suit but well worth the messing about when they do. val
    val
  • frogmorton
    frogmorton Member Posts: 29,453
    edited 30. Nov -1, 00:00
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    Hi janie

    Well i think i'd be feeling pretty bad too if I was you :(

    I do hope the jab kicks in soon for you - maybe it will do today?? :)

    Sorry you feel the extended family dont understand - but we do and it sounds as though those closest to you do at least.

    All I can offer is my support and best wishes.

    Hope really hope things feel better very soon

    Love and hugs

    Toni xx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Janie,

    I am so sorry to read its failing for you. I don't know a lot about the biologicals so have no wisdom but just wanted to leave you a shed load of support and hopes they can come up with something to hep you.

    I so hope you get a decent appointment on the 21st and the 9th and keep in touch. ((( ))) and a ton of hope. Cris
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Thank you so much for your kind words. I have also decided to go to my local arthritis care group which meets once a month at Cannock hospital as well. I met some of them when I was at hospital on Monday and they were bloomin lovely.

    Work is definitely on the back burner, luckily they know how bad I am and have been very good.

    Has anyone been on rituximab?

    Janie
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
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    Hi Janie, Hope the injections have started to work for you.

    Sadly not everyone can get there head round what is happening to us. My OH is brill when I'm in pain, but even he forgets at times. :?

    Please tell us how you are getting on.

    Lv, Ix
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Theresa

    actually even if Arthur did strike Mum & sis theirs would be soo much worse & would expect me to drop everything for them. But just some acknowledgement and some actual kindness from them would be nice. Gggrrrr!!

    Hope you all sleep well

    Janie
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    The kenalog injectio did work briefly for a couple of days but I am now back to square one. Waiting to hear back from biologics nurse as to what to do next. I don't fancy a steroid infusion, what would that do?

    Janie
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello. Steroid injections can be very effective for some, with the positive results lasting for up to three months, even a little longer. It's worth considering. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Hi DD

    kenalog injection is a steroid so have already done that. But thanks for your reply.not sure if an infusion is the way to go. I may be going onto rituximab now.

    Janie
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh, sorry! I got the wrong end of the stick. Wishing you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    No probs DD!

    Janie
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Janie,

    For somethings the steroid infusions are very good, I do know one can help me personally. I don't know about the bones though. I so hope you can find something to help you soon. Fingers crossed for you. Cris
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