Hello again: Hiya lovely people hope that none of you... - NRAS

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Hello again

claireyj profile image
8 Replies

Hiya lovely people hope that none of you are suffering too much today ... Havnt been on for a while various reasons but thought I'd pop in and update u , as a lot of you know my RA story all be it only a year .... Well had a great summer as full of steroid so managed and the beautiful weather and a great holiday helped :)) hope u all had a good summer . However after 2 dmards, various side effects, worrying ultra sound reports, terrible pain in feet and ankles , rf factor 340 pos etc etc nothing seems to be even touching the sides ( only steroid jabs that just mask the prob) ...so my fab rhumi team have signed off a biologic and I start Cimiza in 2weeks ....I am so pleased but also very nervous but realise how lucky I am ....have reduced hours at work but have amazing friends and family too help me and my kids and hubby have been fantastic ... I could go on sick but I work in a school and although its agony getting there the kids little faces really cheer me up and they do make me laugh :) ..

So just waiting now had all my tests and it can't happen soon enough as I have no steroid in me now and the last 2dys my toes, feet, ankles, knees, elbows shoulders wrists and fingers are on fire , burning pain such a scarey scary ugly reminder of this bonkers disease .....trying to remain positive and have my lovely rhumi friend Michelle who I speak to regularly and is such a support - onwards and upwards I guess people ...such a learning curve all this and an emotional roller coaster :(( ..So that's me and like I say although not been on here much u r all always in my thoughts .... Claire xx

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claireyj profile image
claireyj
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8 Replies
cazh profile image
cazh

Hi Claire, good to hear your update, but sorry things haven't been going too well. However, great news about the cimzia, fingers crossed this will be the one for you. It's good you've been able to continue working, I work part time in a college and the students certainly take my mind off ra. Let us know how you get on.

Best wishes, Caroline.

claireyj profile image
claireyj in reply tocazh

Thanks Caroline mine are little people and they are so funny just so blunt : my face is a little puffy because of the steroids the other day little Lucy said to me " Miss why haven't u got a neck ?" uhmm, laugh or cry -laugh of course , bless ... Will keep u updated re Cimzia fingers crossed :))

PJ68 profile image
PJ68

Hi Claire,

I too work in a school, reduced my hours when I started cimzia - that was two years ago x I really hopr it works for you, as reading your blog with your description of burning joints etc is exactly how I felt. I only suffer from that occasionally now - still suffer from swelling etc but better than before x Im glad too that you have good network of support - its vital, as you soon learn who your true friends are!

Take care and let us know how you get on x you can message me if you want any advice or tips!

Pen

claireyj profile image
claireyj in reply toPJ68

An thanks Pen u are so right about the true friends bit some people have amazed me others have shocked me !!!! Oh well onwards and upwards and thanku for your kind message, yeah will defo keep u updated xx

allanah profile image
allanah

Hiya, I am the same as you, still trying to get control and now failing the Humira they think. But I too had a great summer on steroids, hope the cimzia is works for you xx

claireyj profile image
claireyj in reply toallanah

Oh no what a shame the Humira isn't working its magic for you :((( am really sorry must be so disappointing. Your blogs are always so happy n funny i admire u x Heres hoping if they changed your biologic our next one will work wonders xxx

allanah profile image
allanah

I just find complaining makes me feel worse or I just try to pretend I think! But if I put up a comment I am not so good it means I am stuck in bed. Tired out now, stoned the plums my splints r black, plum vodka just about to go into demi John! Then have to pack as going to Glasgow on own till Thursday! Think I will sleep the week lol cx

lorann profile image
lorann

Aw Allanah, sure sorry to hear that, but has it been a long enough wait? I lost track when you began it. Ask them about giving you a booster of some kind, something, probABLY A dmard, that might boost the action of the cimzia a bit. Maybe.

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