I just need to say THANK YOU

Hi all, it’s been a while since I’ve been on, but today, PsA was featured on fb…I followed several discussions from there, and have been teary ever since. I’m not a girls-girl, but my mind swells with all of the really good information here…Not your typical support group.

It’s nice (in a not-so-nice way) to find others with similar situations…I have an incredible 13 y.o. son, who worries and laughs with me, alternately, as I struggle to get around, like a little old lady, with a cane. I have a wonderful family, and live in a home I rent on my parents’ property, who not only help me when I need it, but have a fantastic relationship with my kiddo. I have an amazing group of friends, who recently got together to buy me a three wheeled bike, so I can try to get some exercise, as well as some normalcy. We are surviving and happy.

The pain is constant…“good days” are somewhat painful, but I can get out of bed, without the tears. I rock or move 24 hours a day…At times, it’s the only thing that keeps me sane. At this time, I’m on Humira, but off of the MXT, as my heart and body went completely out of whack, so I get to take a break from it. 6 more weeks, til we start that again. Just hopeful that it will be helpful.

At any rate, I am happy to be alive, blessed with so much, and thank you all for your input here! I do have an Enbrel question, maybe I will get an answer here, or try a new discussion another time…I was on Enbrel for 3 mos., but after the FIRST injection, developed Torticollis, and now all of the muscles on the right side of my neck are distended, and my head is pulled of to the side. One Dr. says its a SE of the Enbrel, but it has not resolved, after being off for a month, in fact, has gotten worse. Has anyone had this issue? If so, any magic tips you could pass on would be wonderful!

Hope y’all are having a great day, and thanks again!

Sorry to hear you are having a bad time. I have been on Enbrel for about 5 months now and haven’t come across this problem. The only problem I have is that it hasn’t really worked at all. Hope it is just a side effect that will soon go away

I'm so glad you re finding this group helpful - they are great people ! I'm sorry I don't have any info on your Enbrel issue. I'm sure someone will chime in with some thoughts.

yeah i hear you on the cane. my ankles swelled one time and i had to buy one. very humiliating but then just as quickly the swelling went away and i was good as new. this is one wierd condition. i love mxt, that is the thing, different people respond to different meds. I have responded really well to it.