Hi I know I'm not the only one with this problem but it is really wearing me down and starting to depress me, I have been on Mtx, sulfasalazine,[excuse spelling] Arava, Simponi, and Enbrel stopped working about 8-10 weeks ago when the Biologics nurse told me to come in and pick up a script for Arava which I couldn't understand because it did absolutely nothing when I was on it before. I see my Rhuemy next week so he can look at my bloods that will be taken the day before and check me over so he can write out a script for Humira and then send it away to be approved then sent to me. It scares me how fast this disease is getting worse, I have PA in every single joint in my body it is even in my Ribs the whole way around so every time a drug stops working and I have flare ups it is so painful because when your shoulders, elbows not so much hands but feet, ankles, knees, hips and then ribs are extremely sore it is so very hard to try and get comfortable enough to sleep. Except when my most intense fatigue hits me then I sleep for ridiculous amounts of time.
I can't seem to wake up or get out of bed on the really bad days and that depresses me a bit because I miss appointments, and sleep the whole day and miss out on things I had planned to do. I'm not allowed to have my granddaughter come stay with me any more because a lot of different levels in my bloods rise too much and that shatters me especially when I talk to her on the phone and she asks me when can she come up and stay at nanny's house and I have to try to tell a beautiful 4 yr old that nanny's not well again and can't look after her right now, it breaks my heart because she is nanny;s girl. I am only 44 yrs old and my body is falling apart already, I hate the fact that the simponi worked so good at first and then so did the enbrel but they just stop working.
I would love any advice that may help with the Fatigue and how do you's deal with the medication merry go round.