am fed up being ouchy

lizzieuk1
lizzieuk1 Member Posts: 302
edited 10. Jun 2013, 13:30 in Living with Arthritis archive
As title really, been on enbrel 3 weeks now and felt def improvement after first jab but now seem to have plateaued off, guess I got myself all hopeful after the first week and now am disappointed :( not really seen any change since the first one, I know I'm prob being impatient but am worrying I may not see any further improvement and I am not in a good state. Have had to put off so many of my patients am v concerned I will loose my business, after 3.5 months off I can't blame them if they go elsewhere I have no idea when or if I will be well enough to work, have spent 6 years building my business up and am feeling more gutted by the day it may have all been for nothing.
My wrists, hands, shoulders, hips,knees, ankles and feet are still so sore in varying degrees I am starting to loose strength in my limbs which has shocked me as I've been so used to managing pretty well before. Am starting to really struggle with my toddler as he gets heavier and I get weaker its not a good combination.
All in all feeling pretty rubbish today, I think I prob overdid things at weekend as we got a pony to keep my horse company ( hes been v sad as not being ridden and his old companions left a couple of months ago) and for the kids to pootle on but i have really struggled doing a few bits with him this morning which has made me even more miserable, I want my old ra self back this new ones rubbish!
V fed up. :(:(

Comments

  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    lizzieuk1 wrote:
    As title really, been on enbrel 3 weeks now and felt def improvement after first jab but now seem to have plateaued off, guess I got myself all hopeful after the first week and now am disappointed :( not really seen any change since the first one, I know I'm prob being impatient but am worrying I may not see any further improvement and I am not in a good state. Have had to put off so many of my patients am v concerned I will loose my business, after 3.5 months off I can't blame them if they go elsewhere I have no idea when or if I will be well enough to work, have spent 6 years building my business up and am feeling more gutted by the day it may have all been for nothing.
    My wrists, hands, shoulders, hips,knees, ankles and feet are still so sore in varying degrees I am starting to loose strength in my limbs which has shocked me as I've been so used to managing pretty well before. Am starting to really struggle with my toddler as he gets heavier and I get weaker its not a good combination.
    All in all feeling pretty rubbish today, I think I prob overdid things at weekend as we got a pony to keep my horse company ( hes been v sad as not being ridden and his old companions left a couple of months ago) and for the kids to pootle on but i have really struggled doing a few bits with him this morning which has made me even more miserable, I want my old ra self back this new ones rubbish!
    V fed up. :(:(

    Sounds like you're having a real rough time, I know 3 weeks might seem a long time to you right now but it’s still very early days and the fact you felt good for the first week is a positive sign! Is there any possibility your doctor could give you something to help you along while you wait for the medication to work? I have recently started a new medication and I was given pulse steroid IV's to help me out while I waited for the medication to work, made a big difference to me.

    Hopefully you will sort something out and your medication start to work soon!
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Lizzie I am so sorry you are feeling so rubbish at the moment, I am afraid I know nothing about the meds for RA as it is OA I have, as the last post said can you not get some steroids meantime until the new meds kick in, sending some ((((())))) hope you feel a wee bit better soon............tc...........Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    It’s no picnic struggling with a long flare plus young children and no wonder you’re feeling miserable. Although I’m only on DMARDS, I think you’re right that it’s probably too soon to expect too much of the enbrel.

    It sounds as if the enbrel did initially help and is, at least, now keeping you at the new plateau. However, you are, understandably, stressing – about work, about keeping up with the kids’ growing strength and about looking after the welfare of your horse (and now a new pony too). We all know how RA feeds off stress :roll: Plus, you say you probably overdid things at the weekend with the new pony and have also been ‘doing a few bits with him this morning’.

    You can’t stop the toddler getting stronger :lol: and I’m not sure what you can do about work. It’s hard graft building up a business and yet also quite hard just maintaining it. Would it be possible to take someone on temporarily to help you?

    As for the horse and pony, I know they’re great fun and a great source of exercise but very hard work, even for the fully fit. Do you know any responsible young person who’d help with the mucking out in exchange for a ride? My young neighbour used to do that before he went off to study to be a vet.

    I think the hard truth is that you’ll give the enbrel a better chance if you can get your own stress levels down. I do wish you luck. It won’t be easy.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Sorry Lizzie;

    This waiting for meds to work or not is pretty awful. Ok, I have another impolite but better description but I'm sure you have your own too!! It's all like some nasty endurance test. The rollercoaster ride of waiting and having high hopes, only to have no relief really is too much sometimes. I've really bottomed out with disappointment a few times. No fun.

    I don't have input on biologics for you, sorry. Hang in there and be extra nice to yourself. Getting used to the timelines involved in trying these medications is sooo long, it's a very frustrating time.

    It helps me to remember that we're lucky to have all these meds, though not perfect, to try. Not very long ago there was not much doctor's could do.

    I know it's not much, but I hope you're feeling better soon. Hang in there!!
    Anna
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
    Thanks all,
    Yes have thought about a steroid, thing is I've had 9 in past 2 years and am v reluctant to keep having them as they mask my symptoms so I have no idea how the new drugs are working, that's why it took so long to get me on enbrel, every time I saw rheumy had had a steroid so said to carry on as the methotrexate would prob kick in - after 2 years I decided it prob wasn't going to!! They really play havoc with my mood so would rather avoid if I can but I will have to think on it a bit as am starting to feel as if my coping mechanism is disappearing.

    I know sticky my horses are more to think about but been riding for 30 + years and they are my stress relief!! They aren't that much work as live out (come in when they want to) and hubby poo picks while I ride lawnmower with trailer on! Prob did too much with pony as wanted to get him started but prob have to get oh to do a bit instead- mind willing but body not playing ball :roll: I would love to have a locum but just not busy enough for someone else and as I treat horses am a little 'unique' in what I do, plus they always end up stealing ur work anyway!!( I knows cynical!)

    Don't mean to sound so negative but seems no easy way at the moment, thanks again for replies has made me feel bit better knowing ur all here to help.xx
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi Lizzie
    We all have our negative days
    Just remember we are here for all days good or bad
    Hope you get some relief soon
    I was told 3 months for methotrexate to start working not 2 years which makes sense as I've been on it since 20/1/13 have had to stop 2wks ago as had foot surgery on thurs and not to start again for 4 weeks then I'm going on the injection form as they say it works better
    Which are you taking tablets or injections?
    Maria
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Oops
    Got that wrong don't know where I got it from thinking you were on methotrexate
    So ignore half of my previous post
    I blame the tablets for my stupidity!
    Maria
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
    Thanks maria,
    Ur sort of right I was on mtx, worked for 7 years for me til I had my son 2 years ago then just lost its effect hence am now on enbrel after trying mtx inj and higher doses/combo dmards for past 2 years.
    Enbrel in a biologic so injection pen and damn does it sting! It can also take 3 months so I am being impatient but having been waiting so long am wanting it to work soon, of course! Been off work since march so is all getting a bit much really.
    Xx