In a bad way

General Support
1

I'm having a bad flare in my feet and my knees, the fatigue is overwhelming (sleeping 12-16 hours at a time and napping) and despite my best efforts, I can't seem to push through it. I'm doing all the exercises my PT taught me (aside from those that require weight bearing on my heels, because my Achilles tendons are both enormous) and I'm eating relatively well. My blood pressure has been high for me and I've been having a lot of pain in my shoulders, elbows and my chest along my sternum and where the ribs meet on the sides- I haven't had involvement in those places before, and it's alarming.

My doctor declared the Enbrel a failure at 12 weeks, and started me on Cimzia, which I did 2 loading doses of before my doctor listened to my insurance company when they said I needed to try Humira first- they apparently had said that to start with, and had approved Humira, but my doctor stubbornly wanted to try Cimzia. I reacted badly to the Humira dose last Friday, and the disease is flaring up hugely. Due to my doctor's epic mistakes in terms of continuity of care (sent me to a number of specialists for dubious reasons and then didn't get the notes from said specialists or incorporate any of their recommendations into my plan of care, and hasn't communicated with my PCP since my second appointment with him in February) and the impressive staff turnover in his office (3 or 4 nurses/MAs in 8 months and 4 office assistants)- and because he simply stopped listening and I am worried that my disease is not controlled- I am going to see a new rheumatologist next week. I am hoping that he can get things under control and get me on a medication regime that works.

I've taken a lot of time off work, and I will likely need to take more this next week- unless something miraculous happens. I feel like a burden to my family and my body won't cooperate. I am a very driven, busy person- I have been going to school, parenting and working at a very difficult job for the past 8+ years and I am so angry that my plans are being changed by this ridiculous illness.

Sorry for the rant.

2

You really are in a bad way, and it sure sounds to me as if your disease is out of control. Not good. I think your decision to go to another rheumatologist is an excellent one, and you are fortunate that you will be able to go next week. I’m guessing the new doc will be giving you a short-term rescue remedy to get through this.

Meanwhile, there you are again: in The Gap. Not a good place to be, but things have to get better. And soon, I hope. Hang in there, and look after yourself.

3

Thank you, Seenie- I'm doing somewhat better today. I am very hopeful for this new doctor!

4

I hope you find relief with this new doctor. Hopefully some recuse meds to see you through.

5

Amielynn- the new doctor did prescribe a low-dose prednisone taper, and it's helping. I am in a bit of a rough patch since I had to take 2 weeks off of my biologic and MTX while on antibiotics, but I started back on those yesterday and today and am hoping things will return to something approaching normal soon. :)

6

Glad you got the prednisone! At least it will give you some temporary relief. I am also experiencing a bad patch. Back on the pain medication. It seems to come and go. The changing weather makes it worse. Hope the biologics kick in right away!!

I love your avatar picture. Looks like somewhere I would like to be right now :)

7

Rosen, to be honest, I’m relieved that you are seeing the new rheumatologist. It sounded very much like things weren’t under control, and now it does. I hope that you have a comfortable and happy Thanksgiving.

8

So glad you chose a new doctor and new course of action! I hope things continue to improve!