This has probably been my best Xmas in 7 years. I'm not saying that to annoy folks. I'm telling you to give those of you who haven't found the right drugs yet that when you do things will be so much better!
I managed to cook for 8 people for four days plus a 21st party without killing myself, with help from my friends and family and only having painkillers at night.
Tcz plaquenil and arava seem to suit me well !!
So when it comes I hope next year sees you " finding the one", and I don't mean partner lolπππππ€π€
Santa came and had the mince pie and whisky but the reindeer left some glittery carrots!
Happy New year to you all xx
Written by
allanah
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Probably is farm, one of nurses at recent patient course said the pharmaceuticals donot like to say what their drug is actually targeting due to patent issues, great eh? However that still leaves question of why we all respond differently to different drugs, surely it's the same disease? Mystery.
So pleased your doning so well. It's so good to hear your new drugs are working well for you.
I also have different drugs had them since February. What a difference it has made to me. Even started horse riding again . Had a fall last week hey and no issues! Can't believe it.
Thatβs fabulous.... how long have you been on Benepali? And how long did it take to work? They are starting me on it alongside methotrexate. Do you suffer side affects?
I really need something.... the past 18 months have been awful - I be always been so in to exercise and competition and I can do nothing! I am hoping Benepali will be my turning point... good to hear itβs working for you.
I have been on mex and sulphasalazine approx 3 years starting with one then the other and then both which seemed to do the trick. Since March I have been on a downward cycle which started with bursitis in my left shoulder, nine months on and still my shoulder has not been sorted due to the long waits in between appointments and waiting to see if the steroid injections take effect. I have been to see the rheumy nurse but can't see the consultant again till next March. I have also been backwards and forwards to the Drs to try and find some pain relief which reduces the pain but does not make me into a zombie.
Really looking forward to March but also anxious of the consultant increasing the mex by one tablet and leaving me in limbo for another year.
What do you guys report to your consultants which makes them take notice?
Truthfully .....i took my husband. He spoke man to man..... now i know thats a really sexist rhibg but since then my rheumy sat up and listened! And we have a great relationship now .
Take someone with you that will tell them how it affects the whole family.
Also just keep ringing the helplines as you get seen quicker I found. You have to be your own advocate in this game and if you don't keep telling them that the steroid they have you or pull they have you doesn't work they presume it has!
My OH would always come with me when things were bad whereas I would go on my own when 'stable' - my rheumy nurses noticed and commented on it. Not sure which of the kids to take now if necessary - I suppose one of the ones still at home as they see more.
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