I have been battling this disease for nearly 4 years now and have been on almost all the drugs and regimes that are available to me. for one reason or another i have been on and taken off, MTX, Sulfasalazine, Humeria, Enbrel, Tocilimub and am now on Abatacept. i have to say here that i am sero negative and that prohibits me from being able to tolerate certain drugs that are available to others.
i started Abatacept 18 months ago. firstly on infusions for 6 months and then on self injections. after about 9 months into the therapy i woke up one morning and 'felt' something different. i lay in my bed for a few minutes trying to figure out what was 'different'. i got out of bed and started to make my way down the hall when it struck me.......I HAD NO PAIN! I could move, walk, stand, use my hands and arms and i could do it all without wincing in pain.
that continued until about a month ago when i started to feel wee bits of pain in places where i had felt none for almost a year. this eventually led to a full blown flare where i was incapable of almost any kind of movement. i was back on huge amounts of pain relief that i didn't need to use for so long.
my main fear at the time was that the drug had stopped working for me. i have a bad track record...... i did some drowsing on the internet to see what was available to me if indeed the Abatacept had had stopped working. the result was not encouraging to put it mildly.
yesterday i had my quarterly visit with my rheumatologist. she acknowledged that my bloods were not great. she also advised i go back on splints for my wrists as driving has become so painful. she was as upbeat as she could be. she said that i would have to stay on the Abatacept.........as there was nothing else for me! "you have had all that there is available now"........that quote has been ringing in my head since i heard it yesterday......for now, Abatacept is the end of the line with regards to Bio's.
although the flare has receded i am back to pain everywhere......in my 'remission' i was able to do voluntary work for the whole of last summer. this summer i will have to get someone in to weed the garden for me! it is so unfair. i have a holiday booked too. i haven't had a break since i was first diagnosed 4 years ago. i was looking forward to it so so much. now it looks like i'll have to carry my walking stick with me......lovely, walking along the beautiful sandy beaches.......with a walking stick and a limp.
i am feeling a bit down about it all.......but.......i have been worse and i just have to keep telling myself that and just be greatfull for what i have. i don't do religion so i need to fall back on my own human resources and the help of my rheumy team to see me through. and to the good people on here who listen to my ranting on.......thanks, you've been great. XX