Simponi

Well finally the day arrived on Monday- was really stressed and grumpy before the nurse came. He was so nice, went over everything again, had me sign more paperwork, let me practice with his dummy injector, then it was time for the real thing- deep breathe, and did it. The injection was painless, which MTX was not. So happy. Anyway Tuesday came, wakened feeling rested and looking forward to the day, well as much as I can when every joint is screaming at the least effort , however by the afternoon felt I had so much energy, and realised I had not taken any meds for nausea.....unusual but maybe I just was eating more sensibly. Have started a real conscious effort to lose weight, what with no exercise and limited activity, steroids and DMARDS that cause weight gain have piled on nearly a stone since December, anyway I diverse.

Today, 48 hours after taking my first Simponi dose, I realised I can actually move a little easier, still taking as much pain meds, but it does feel easier. Mid morning I noticed I had not one single hot stinkin sweat...not one...and I get these every blooming hour or so, and here I am not a one. Oh so exciting, is the Simponi doing what it says on the tin, this early? Anyways suffice to say, renewed energy, no rivulets of sweat pouring down my body, sun shining, I decided that I could walk the dog, not her usual 15 minutes with me, but a whole hour. On the way back I really struggled, just sore. So home and rested for an hour, then, sun is still shining, a few dust smotes teased me as they danced in the evening sun, so yes, you guessed it, started washing the floor and dusting, and a whole host of other things. And so here I am, pain meds at the max, splints on and so angry with my own stupidity . How many times do I have to tell myself to slow down, how many times do I have to read of others doing exactly the same thing and not pacing ourselves- am such an idiot. Anyways, will be better tomorrow and for tomorrow I have learned today.. Until the next dust smote catches my eye

Just wanted to share a little laughter with all of you ...maybe just maybe this biologic is the answer-

Hugs to all from this ever living optimist

X

18 Replies

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  • Hello Katie,

    I am absolutely thrilled for you that you are already seeing huge improvements on Simponi! As for the overdoing it, don't give yourself a hard time - it's only natural to overdo things when you suddenly find you can!

    I really, really hope that this biologic IS the answer for you Katie,

    Thinking of you and hoping tomorrow is another much better day for you.

    Tillyx

  • Thank you Tilly and I so hope this is the answer for me and laughing at your comment " stop giving myself a hard time" two of my friends say that to me all the time. I am trying to keep my excitement under control- it may not be the Simponi, but something has changed that is the only thing that has.

    Hugs to you and hope today is kind to you

    Katie xx

  • Katie, it IS the Simponi! I've been taking it for nearly 3 years, and have had the same results! Enbrel and Humira just didn't cut it, but with Simponi, I often forget I need to be careful, so I work along until things get sore, then I go "oh yeah, forgot the pain meds"! If we can ever acknowledge how much activity fits the time frame and how much is over-doing it, we just might enjoy the whole Summer. :) All the best, Loretxx

  • Loren, thank you so much for that encouraging reply- I can hardly contain my excitement now. Today I am sore and that is understandable reflecting on yesterday- the stiffness is still improved. Will stay in touch with you

    Katie xx

  • Great! You are on your way to a good summer. Just remember to pace your activities, alternate active, with sedentary. you will get just as much done in a day as if you tried to do it all at once!

  • Katie, i am pleased that simponi is working well for you. I am the the worlds worst for overdoing it, even i think i would have baulked at doing housework after that walk. When you feel that great you think you can do anything,but sadly it isn't the case. Now you must rest and let the simponi do its job and remember no long walks and more pacing.xxxx

  • Sylvi- you are so right and I should have learned by now. However every now and then, I get angry that I have this disease and decided to myself I do not have it and lets do everything I used to without thinking, and of course within hours I am reminded with absolute certainty that I do have RA- then I look at my hands and see the damage already done in such a short period of time, feel that joints that are so swollen and painful and cold reality dances in again

    Will repeat 100 times to myself, every hour if necessary, pacing!

    Xx

  • Katie i so know what your talkng about. I have just got back from the drs and it seems that i am flaring big time. My steroids are now being increased to 3 a day for a week then 2 after that. God this disease is sooooo painful and i feel so ill with it as well. I hope they soon get that cimzia as i need it like now..... xxxx

  • Oh Sylvi I feel for you- this disease certainly tests our patience and temper. Are you still on DMARD,s? Or is the Cimzia a change of current biologics?

    We all struggle every day and I so hope today is a little easier

    Hugs

    Katie xx

  • I think i will still be on all my other drugs. All i seem to have done today is sleep. Thats the second sleep i have had since we got ack from the drs this morning. This is the first anti-tnf that i have been offered.xxxx

  • Some days all I do is sleep- the fatigue that comes with RA is horrendous and so many observers just do not get that. I do believe that the body sleeps when it needs to and it never fails to amaze me how exhausted I get after what are relatively simple things, for example as you have described, going to the GP. This afternoon I am totally exhausted and just not feeling myself at all, putting it down to too much enthusiasm this week and starting on biologics. I do so hope that Cimzia is the answer.

    Sleep well and look after yourself the way you would a precious orchid

    Xxxxx

  • That's a lovely thought to be compared to an orchid,fibro and ra is no fun is it,because you don't know which one is causing the trouble. I am resting and i don't know think i will be doing much tomorrow either.

    xxxxxx

  • woow and wow such good news,. when I had the choice of 3 anti tnf dangled in front of me on fishing line like a tempting carrot.. which has now been reeled in !!! Simponi wasnt one of them.. it would to appear be a very expensive drug but a very successful one.. it is much more expensive than the other 3 which is why for me it was never offered.. my health trust very very.. budget driven!! makes me mad x

  • Hi Summer, I do so hope it is the Simponi. I was not aware of the cost, I knew like all other anti-TNF, it was expensive and that my health board offered a choice in a very short time and for that I am so very grateful. Today has started much the same as any other day, probably as a result of not pacing yesterday and quite simply over doing it- can just imagine my Rheumatology team if I phoned and told them how sore I am today they would just shake their heads, give me a hug, and say- my own fault and tell me to do nothing today and wait till it gets better.

    So quiet day, not even lifting a duster let alone a dog lead.

    I get so frustrated when I am unable to do anything, I used to knit all the time, so when sitting resting time,passed fruitfully with baby clothes fast filling the wool box, now I simply cannot even think about it picking up the needles.

    I am sending gentle hugs

    Katie xx

  • Katie I so hope the Simponi is the life changing drug for you that some on here seem to find it. Your RA sounds pretty heavy duty just now so rest and give this new drug a chance to do its thing. Your rheumy team sound great (hugs and Simponi?!) so here is hoping that you will be knitting again - and dusting - and all other things you long to do very soon. Tilda xx

  • Thank you Tilda, just trying to keep a lid on the excitement, and my head niggles the unpredictability of this disease and for today I just have to be slow and steady and not push anything

    Hugs

    Katie x

  • fantastic! How brilliant for you to have something that works. I well remember the magic moment when MTX started to work and I woke up one morning feeling if someone had oiled all my joints so they actually moved for first time in months. Hope it just keeps getting better and you can soon start to forget about taking it slowly. Polly

  • I Katie,

    I hope you continue to improve. It is a great feeling when you feel an improvement isn't it after all the stiffness and horrible pain. I started rituximab last year and it has helped me so much.

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