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.
Oh Tracey--I'm sorry you are feeling so down. It sounds like your rheumatologist is trying just about everything to keep your disease under control. I switched from Enbrel to Humira because Enbrel stopped working after a while and even when sulfasalazine was added I wasn't getting very much relief. When I talked to my Rheumatologist in December about my worries that Humira wasn't doing a great job, either, we talked about going back on sulfa or back on MTX (which I took before Enbrel). The thing to consider is that the DMARDs can sometimes work better (or worse) in combination with biologics and it isn't the same for everybody. So, while I had to take 4 sulfa pills a day with Enbrel, I might be able to take a smaller dose with Humira.
One of the things my doctor does--and I've written about it here--is to put me on steroids every now and again. He does it when I'm in a flare or when I'm struggling with fatigue which, for me, is a sign that my inflammation is going unchecked. It really does help out a LOT but it isn't an optimal course of treatment for the long term. He puts me on it, too, when I'm going to start a new medication (like adding a DMARD) because they can take so long to kick in. you may want to think about this. I'm your age, too, and I would have lost my job last year if I hadn't been on Prednisone. Without it I would have spent many, many days in bed--many more than I had accrued in time off.
I have written on this site about a book I recommend called "How To Be Sick". While you probably feel like you could write a few chapters yourself, the book has been really helpful for me on the days I'm overcome with how unfair this disease is and how I feel like I'm missing out on my own life. It helped me to come to a new level of understanding and a deeper appreciation for all I can do despite my disease. I also participated in regular counseling appointments for several months before I felt like I had a handle on things. I hope you will be bale to find a copy of the book either at your library or through Amazon. It is well worth the read and she even has a "what should I do when..." part in the back to help you when you're feeling bad.
I'm glad you reached out for support and I hope you'll try to take it easy on yourself (body and mind). Wishing you the best. Jane