National Rheumatoid Arthritis Society

Where's my miracle??

6 weeks ago today I left hospital after 9 days on the ward.

I couldn't stay anymore as there was no more they could do for me and my mum agreed to administer all the drugs and nurse me.

As some of you know I haven't been on here in a while as I have and still am quite poorly.

I still have oral morphine every 2 hours and need my wheelchair to even get to the toilet.

Aged 24, I need my mum to wash and dress me even get up in the night to take me to the toilet.

I take a lot of medication and whilst in hospital I finally qualified for enbrel. Week 7 of the injections and I haven't seen any change what so ever, in fact my elbows didn't hurt before and now they do so I'm worst.

I've read all about these miracle anti tnfs. Where's my miracle??

Having seen no improvement and still being in pain I went to the consultants yesterday, I was there an hour and the only thing I came away with was an appointment in 4 weeks because I need to wait the full 12 weeks to see if it works. Somebody please tell me this is wrong???? I can't live like this for another 4 weeks.

Also since my last injection I have developed a strange hardness all over my body. I am on 40g of prednisalone which had already made me balloon from a size 12 to a size 20. I was fine with this it was liveable. This new hardness is so painful and restrictive, I look like a little wrestling figurine :-) if you don't laugh your gunna cry hahaha.

Has anybody else had this hardness? Is it a reaction to the enbrel?

I spoke to the consultant who just didn't really respond about it and brushed it away which makes me think it is a reaction to the enbrel but she doesn't want me to stop it just because of that and won't say it to me?

As you can tell I'm totally confused by the hardness. It looks like hard cellulite, all over my arms, thighs, belly and I look like I've had a boob job because of the hardness of them.

I went to my gp today who took one look at me and said my disease is out of control and she is not even gunna look at me, I am too ring my consultant first thing in the morning.

Please help, even if you think it's unimportant please post incase it helps.

Also apologies to everyone who was worried about me and messaged me. Thank you all for your thoughts I wasn't being rude I just haven't been able to type.

Off to rest my little fingers now.

Fingers crossed some of you no about my hard wrestling figure :-)

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30 replies

    helixhelix
    helixhelix

    Hi there, I can't offer any bright suggestions - just masses of sympathy. It sounds absolutely awful, and I feel for you. You must keep asking for more from the health service as it sounds as if you really need them to pay full attention. Good luck & hope your miracle arrives any second now. Polly

    summer
    summer

    My Dear Marnie.

    I am amazed by the fact you are still so postive.. well done you!
    The Gp should have looked at you!. im afraid most of the Ra drugs take 3 months.. mine took almost 6 months !gold injections is one of the slowest.. but I have had benefit for the last month now..!
    You will get there i promise, if not with enbrel then with something else, I wasnt given the chance of anti tnf,, my nhs v poor no money!
    I too put on weight with the steroids it isnt great but they help until treatment works.. im nearly off them so can try and start to try and loose weight but im under no illusion it will take time!..
    I am afraid I dont know what this " hardness" is

    I
    I

    Wiliby
    Wiliby

    Alison, thats great your starting to feel better, delighted and long may it continue! x

    summer
    summer

    sorry is this computer being silly?. incomplete reply
    I am thinking of you and sending my best wishes

    Alison xx

    Marnie87
    Marnie87

    My positivity has been sparse that's why I haven't been on here I didn't want to put a downer on anybody or anything.

    The steroids made me balloon so quickly in like 1 hour my bra was too tight lol

    I'm just worried about the hardness.

    It All takes soooo long too. It's hard to see the light at the end of the tunnel.

    How have you been? Xx

    sylvi
    sylvi

    Thats what we are here for to support you when your down like you are at the moment. So come on here and rant all you like we will try and cheer you up as best as we can. Lifes s""t when you in constant pain like you are and so young. Keep blogging and we'll all answer you.
    Sylvia.xx

    Wiliby
    Wiliby

    oh Marnie, I have thought about you often and was a bit worried that we hadn't heard from you, your so amazing and I feel so sad that enbrel hasn't worked for you, yes previously you have been positive, even from your hospital bed but you say you haven't been on here as you didn't want to put a downer on anyone, I don't mean to nag Marnie but why shouldn't you come to us for support? you have always given us sympathy, advice and support and your so young yet suffering so badly!!!!

    flip sake I'm so hormonal :)

    I'm sorry I can't answer the hardness question either but you really do need an answer from your consultant, let us know how you get on xx

    Marnie87
    Marnie87

    I'm back now! I no I should of kept on coming on here, quite nice chatting again to everybody.

    Hormonal?.. I'm thinking of taking out shares in Kleenex.

    PM me if you wanna chat espec about the work thing, I no how horrible bosses can be.

    My mum is going to call the consultant tomorrow so fngers crossed. Just worried as it's around my neck and I don't want it to effect my breathing.

    Mums mean business :-)

    How's your little one? X

    Wiliby
    Wiliby

    morning, how are you today?
    Little ones great, starting to walk now and I'm ever so glad I'm able to keep up with her!
    argh stupid boss people, when I see what your going through it makes it all quite trivial, thanks for the offer, you may be sorry for the offer!lol

    Your Mums sounds great, just what you need :) let us know how it goes xx

    Andrea_Shapiro
    Andrea_Shapiro

    Hello, Marnie, sorry about your disappointment with Enbrel. This is a drug that has a too high expectation. I have had this for 2 years now, and I can't dispute that it's made a difference, although never to the level that I supposed (when it was originally mentioned to me two years ago), I thought it was going to give me wings!

    Marnie87
    Marnie87

    Have you had any symptoms at all?

    RA-Fibro
    RA-Fibro

    Hi Marnie,

    Ive just come off Enbrel after 6 months off it not working, I really hope this isnt the case for you and you get some results soon,
    I so know how you feel I too have days were I cant physically wash or dress myself then the days I can once Ive done it Im that tired I need to rest again.

    Has your OT helped you out with some aids etc at home? Do you have any help from social services with your care? If not message me and if I can offer you any advice I will.

    Steriods are the only thing getting me through however like you say the weight gain, moon face and facial hair!! are a nightmare luckily the facial hair is just little blonde hairs but it still needs immac once every two weeks or Im sure Id have a full grown beard by now lol x not a good look at 34!!

    Ive not noticed the hardness to be honest so cant help on that, but the weight is really hard to control Ive been on oral steriods for over two years now and also have regular injections, Im currently taking 30mg off oral steirods but in 28 months Ive been on doses varrying from 80mg to my lowest dose off 20mg, before I got the steriods and was diagnosed I had lost 3 stone rapidly as I was that ill from the RA and in pain I couldnt eat etc, when I drop to 20mg off oral steriods or lower my appetite completley goes again and I struggle to eat which in turn gives me even less energy.
    So its just a vicious circle, since I got put on the steriods I put on 4 stone so that was my 3 stone and an extra one for luck or whatever!! but like you I hate it and its even harder to try and lose weight 1) when you are still on the steriods that cause the weight gain 2) when you are in a wheelchair and so immobile.

    Really hope you can get some further help soon.

    Take care

    Julie xx

    cathie
    cathie

    Mar ie, this sounds dreadful. You mothers pro ably the best person in the world to phone the hospital, but your gp really should too to get things going.
    I don't believe medicine should be private but on two desperate moments in ten years of having this dread disease I've arranged to see consultant privately as I couldn't face waiting. It was horribly expensive but worth it in terms of time spent and outcome.
    I really hope you get sorted, it does happen. Xxx

    LavendarLady
    LavendarLady

    Hi Marnie, so sorry for the problems you are having. We all hoped that your stay in the hospital would sort things out but obviously not.
    I was on Humira for about 18 months but had to come off it as came out in a rash and now on Enbrel which seems to suit me.
    It does take up to 12 weeks for the anti tnf to kick in but sometimes can start to improve things before that.

    Are you also on MTX as well? together with folic acid.
    I have also put on weight since having to have steroid injections and little exercise because of the pain. I was also in a wheelchair for several weeks until the drugs (steroids) got to grips with the RA. I went from a size 12 by steady increases up to a size 18/20 which I hate as nothing fits and I have had to buy a new wardrobe in larger sizes! Makes me feel awful having always been slim.

    Cathie's suggestion of seeing a consultant privately is a good one but you may have to pay up to £150 to see him + the cost of any drugs he administers such as steroid injections. I was referred privately when first ill,by the orthopaeidic consultant and have been with my RA consultant every since and he is brilliant. For my general check up every 3 - 6 months, I go to the main NHS hospital and see the Rheumy nurses. If I am feeling really ill, I can ring my consultant's secretary and she will fit me in to see him urgently.

    Your GP should also be chasing the hospital not just leaving it to you or your mum.

    I know you can get nodules with RA - if I am having a flare up, they seem to appear everywhere but disappear again once it has settled down. Don't know anything overall feelings of hardness though. Speak to the consultant about that.

    We are all here for you for support so don't hesitate to blog or message one of us. Love LavendarLady x

    Marnie87
    Marnie87

    Thank you.

    No I'm not on mtx I had a severe reaction to it.
    So now I'm stopping my enbrel this week I'm not on any RA drugs gain!

    Just all my pain relief and steroids.

    X

    cathie
    cathie

    I agree with everything you say. It's hard deciding to make yourself a nuisance, but I've usually found it works. Its terrible hearing. Of people in pain. But it does sound as though the consultant is too relaxed.
    Of f to catch a bit of autumn sunshine in the hope that'll help the pain in my hAnds. I think I must've stayed too long in bed this morning
    X c

    Marnie87
    Marnie87

    My mum has called the consultant who has said she doesn't know what the hardness is but Incase stop my enbrel this week, it's due tonight. And call her on Tuesday to tell her if it's gone down. But means I've gotta stay in this pain! She told me if it gets worst or effects my breathing go to a and e! Just feel I gotta go thru the hole hospital sarga to get something done! Gunna hold of on a&e for the moment because I can't face it but it really is painful.

    Nobody knows what it is and that's the most worrying thing.

    :-(

    Marnie

    LavendarLady
    LavendarLady

    Marnie lovey, there's not much any of us can say really except get plenty of rest, use your pain meds when needed, hot and cold packs for your poor joints as well. What a lovely mum you have but she must also be very worried about you.

    I really do think you need to see your consultant rather than being fobbed off with telephone calls. would your mum be willing to ring again and demand an appt? I know it's difficult and you have to be one of those people who jump up and down and demand results (bit difficult in your wheelchair, lol). I am one of those people who don't suffer fools gladly and being a lawyer, am not afraid to make a fuss and complain but I appreciate that not everyone feels they can do that.

    Sometimes the good old NHS needs a kick up the pants!

    Hope it won't be long before you get the help you need. Your consultant could also try a different anti tnf rather than leaving you stuck! Love lavendarLady x

    Ella32
    Ella32

    Hi Marnie

    I've not spoken to you before, my name is Ella and i am 32, I have had JCA (a young persons RA) since i was 13! I have had 2 hip replacements, 2 knee replacements and several joint fusions. Mum and I just read your messages and want to tell you we've been there, this f**king desease attacks you and those who love you until your spirit and hope is paper thin. I am not diminishing what older RA sufferers go through AT ALL but juvinile RA hits you so hard and with such strange outcomes..... in a different way. I am on Enbrel and for me it has been working to make me about 60% better for the last 8 years, but i still have joint deteroration and desease activity. If i remember rightly it took me about 2 months for the Enbrel to reach it's full potential. I have never had this hardness you talk about but somethimes bits of my body go it to muscel spasm and that results in extream hardness in that area and is very painful - this happens because the muscels around our bad joints are working over time. I don't know if this applys to your case?
    I have tried all different ways of having steroids (and while i was on them i too balooned out in every direction) but they quickly found i was allergic to them. I also tried MXT but that quickly messed up my liver, I have also tried many other desease modifiers (sufazalazine, Gold etc...) but they all caused some wierd problem or just didn't work at all ;-(

    Life has got better the older i got, but i think that this was more down to me changing the way i deal with the disease rather than it getting better - at 24 i too was in a wheelchair even to get to the toilet and needed mum to help me dress etc... but now I live with my (new) husband... we recently got married (look at my profile pic) and our house is beautiful and perfectly adapted for me eg stair lift... raised toilets etc and i now only use a wheelchair for long distances. I do some voulentary work which makes me feel useful to the world and i have some lovely friends. My mum and I have never got over the hell we lived in my late teens early twentys but the nightmare has faded slightly, she still worries about me every second of the day and neither of us can quite trust this 'relative' calmness we have. I guess what i wanted to tell you is that it this disease does change and life can get better, what you are going through is cruel, but PLEASE hold on to hope - that was the only thing that got me and mum through some of those dark days - i can't promise you that you'll be fixed, but i can say hold on, things change...

    We can't change the situations we find ourselves in, but we can change how we choose to deal with them ;-)

    Ella xx

    Ella32
    Ella32

    One last thing for now... write a pain diary for every few hours of the day, but be REALLY honest and mark down the significant things for you like... pain out of 10, hardness out of 10... Believe me it is a great coping statergy as you can't exactly remember how you were yesterday even if you think you can. What you will find is that as the days go by and you mark yourself (without looking at your earlier mark) that the scores go down and can help you see your progress when normally you wouldn't!
    Ella xx

    cathie
    cathie

    Your mums sound wonderful!

    Ella32
    Ella32

    Thanks Cathie ;-)

    muffin
    muffin

    Sorry to hear you are having such a bad time. I have been on enbrel for 7 years, and it has just turned my life around. Don't feel down, if this anti-tnf doesn't work they will try another one for you.

    I am very lucky I have a marvelous Consultant who explained ebrel to me in detail and what to expect etc. Every step of the way she is with me, and I am never alone with my problems with her by my side.

    Enbrel is worth waiting for to get into your system. I had to try the usual two standard medications and when they did't work I was put on enbrel straight away; You will find it easy to use and to inject yourself. The suppliers send a nurse to your home to show you how to do it so it is no problem.

    Hold on in there, it will work.

    I haven't come across the solid skin feeling, see if your GP can help further, and if not change GP in your practice, you will be amazed at the different attitudes GP's give to RA.

    Wish very best wishes for your to feel much better soon.

    Muffin.

    swoodge
    swoodge

    Hi sorry to hear you're in so much pain, I can only say that the hardness could possibly be water retention like oedema? It can make your skin go really hard and feel really waxy. I have it in my legs and ankles and feet at the moment and the consultants think it may be a reaction to the Humira i'm on or insect bites!! So i'm off the Humira and also the MTx so i'm back in pain again stiff as anything and limping again having gone into near total remission, so i'm slightly p****d off with it all. They dont seem to know what these anti-tnf's can cause as they are all relatively new so any sign of a possible reaction and they whip you off them. The oedema's a really strange thing where the water builds up in the skin and tissue and just swells up and my legs look like balloon animal legs! Its weird as it happened so fast if thats how you feel tight skin and solid then maybe what you have. Just a thought. Hope you get some relief soon
    Sue x

    Marnie87
    Marnie87

    That's exactly what it is. Well I don't know but your description sounds like what mine is. It's so hard and its lumpy. They've told me to not take the enbrel and it was due today so I am to call the consultant on Tuesday.

    Is there anything that they told you to do about the oedema?

    X

    Caradog
    Caradog

    I've always been told,whether I'm in flare-up mode or oedema - to always sit with my ankles higher than my backside.Sometimes it works,others not - but I'm now in the habit n do it naturally at mine - when I go to my Mam's I have to rearrange the furniture tho lol!!

    Cece
    Cece

    Hi Marnie,
    I've been wondering how you are - and am very sorry to hear how dreadful you're feeling just now:-(
    Have you tried calling the NRAS Helpline? They are really helpful about things like problems dealing with hospitals - you've already been given a lot of good advice here as well.

    Try not to be frightened - when you're frightened pain is harder to bear and it becomes a vicious cycle. Have you told your drs that you feel so frightened and despairing? Don't worry about crying or being upset - sometimes people just don't 'get it' unless they see your distress.

    Keep blogging when you're up to it - it's not good to become too isolated. Distract yourself as much a possible - movies, box-sets etc - it helps to break the pain - tension - more pain cycle.

    You will get through this and things will improve - but I don't think that there are any miracles out there.

    Meanwhile, more power to your Mum - she must be desperately worried about you - 'making a fuss' is what's needed!

    Gentle hugs,

    Cece x

    Rabs
    Rabs

    Marnie

    Just wanted to send my love and thoughts are with you. Such
    painm torment etc. at such a young age. Take care

    x

    toxfreelizzie
    toxfreelizzie

    My heart goes out to you! God, I think everyone here feels for you. You certainly couldn't improve on your attitude - you are being so brave.
    Keep on trying, keep on and on and never give up. Pester the death out of your GP and your consultant and don't let them fob you off.
    Remember you will get through this, stay as positive as you can, forget about the weight problem, once you get the right result you can always work on that later.
    Even though we have not met, we are all your friends here!!
    Big hugs Lizzie

    nancy66
    nancy66

    My heart goes out to you Marnie, i can't imagine what you are going through. We all live our own 'hell ' with this disease but it sounds like you are getting more than your share.

    My you find relief soon and may god bless you !!!

    take care, Nancy

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