I’m new to the board and came upon it while doing a bit of research online.
I’ll start by saying I have PsA and P. Had P for years and PsA since 2014. It’s getting worse everyday. I’ve been most of the biologics with little to no improvement (skin or joints). So I pretty much running out of options.
Rewind a few months to Jan when my employer switched insurance companies. From that time forward it’s been a nightmare of drug approvals (prior had no issues). In order to use Taltz and I would have to try Stelara. I decided fine what do I have to lose and took Stelara. P calmed down a bit flake wise, but my PsA/ joints haven’t stopped flaring. I have it in my hands, elbow, hips, knees, ankle and feet. The Doctor I was seeing wanted to see me again for a re-evaluation to start the process for Taltz. At that time I made the decision that I wanted to switch Doctors and have another set of eyes look at my history. (bad decision). I didn’t care for the 1st Rheum, but the 2nd one was even worse. She basically told me that my only option was to start methotrexate, which I do not want to take. Maybe a bad decision, but it’s my decision. I kept saying no and she kept saying yes. I felt the whole visit was her push to sell me on methotrexate and I wasn’t having it. I left with another 12 weeks of stelara.
Fast forward a couple weeks when I had my appt with the Derm. She asked if I had ever tried Methotrexate and I said no that I didn’t want too. (I am thinking in my mind here we go again). She to my surprise said, I don’t blame you. Finally someone who will listen. We went over everything and she agreed I could give Taltz a try. She has patients on it who have seen great improvement. Of course it was denied because I haven’t tried Methotrexate, which wasn’t on my denial letter in Jan. We are appealing it and hopefully will have an answer soon.
Now fast word to this week. My handicap permit is set to expire in July, so I sent the paperwork to the Rheum to complete as they completed the last one 4 years ago. I got an email back from her asking what my disability is. Seriously? I have a hard time walking, my feet at times are swollen, I can’t bend my toes, my big toe is totally numb, pain from hips down to feet (sometime numb), ankles and back of feet hurt, most times I have to walk slowly due to the pain or stop and rest and I can no longer do stairs like normal. I fractured my left foot in 2013 and was in a boot for almost a year. Which is around the time I start having PsA symptoms and gained a major amount of weight due to inactivity. I can no longer do stairs like a normal person. Stepping off curbs I go sideways. This new Rheum won’t sign it because she doesn’t support the Eligibility Certification Statement and she asked the other Rheum to sign it and she won’t because I am no longer under her care. She seem to think that at my appointment the reason I was able to lose weight was by walking. Not the case (monitoring my food intake on WW). I try to walk as much as possible, as I want to keep moving and hopefully get better. Weight loss will only help my joints as I am about 175 over weight. Nothing has changed and if anything has gotten progressively worse since the originally Doctor signed the form 4 years ago. (she is no longer there sadly or she would still be my Doctor).
I’m beside myself. I surely don’t want to pay to see another Doctor (the other Rheum were PA/NP not Doctors) just to see if they will sign my paper. I keep sitting here thinking about the long walks I will have to take to work in the city and god forbid the elevators break down and I have to try going up and down flights of stairs in the parking ramp. I know I have some good days when I am not flaring, but those days are far and we between unless I am talking Aleve by the handful. Even Aleve don’t work anymore to numb the pain or inflammation. Maybe I am wrong to think I should be “approved” for the permit, I don’t need it, that others are worse off than me, that I am perfectly fine. This condition is depressing, if it’s not one thing it’s another.
Did I mention, now I will have to find another Rheum because I ain’t going back to this other lady. wish I could find one who I like and will listen to me and hear me out.
Sorry for the long rant.