Feeling better

It's been awhile and I've been down with my psa and pustular psoriasis all over my feet. Every few days there are new blisters covering the bottom and sides of my feet. Along with that seems that my psa in general has been severe. I had a rheumatologist who's staff sat on my request for approval for remicade infusions, (after having bad luck with humira) this led to six and a half weeks having 2 different light therapy treatments a day, 3 times a week. My feet and legs were being wrapped every other day at the dermatologist and a trip to the hospital for iv antibiotic. After several weeks my dermatologist was livid and left a message for the rheumy to call him and explained to her that i'd been waiting to get this treatment and my condition was severe, she was indignant and defended her staff 100%. Meanwhile the derm staff was trying to get approval on their own for treatment. the rheumy staff refused to allow me to speak to my doctor, followed by an attitude and sending blank request to my insurance for approval several times, I ended up in the hospital for i.v. antibiotics because of infection on my feet. I had always had a nice relationship with my rheumy and she describes me as a very pleasant patient in my records, but as soon as I received the approval I immediately found a new rheumatologist. He's changed the amount and time between infusions. I go to the infusion center at the hospital every 4 weeks and am praying I get some improvement soon. I had one last appointment with my old rheumy and explained to her the treatment I recieved from her staff ie not returning calls, delaying my approval for treatment by 5 weeks, claiming they had 3 to 4 week period just to submit the request for approval, although the rheumy had ordered it asap, my visit to the hospital and treating the derm staff badly. I let her know her staff wouldn't return the calls from my insurance, dermatologist or the infusion center. She told me her understanding was I was just plain impatient and rude. I assured her that was not the case and that every conversation I had with them, I actually tried to "kill them with kindness" out of complete desperation for treatment. She wanted to forget it all and start new, with not even an apology. My insurance suspended their contract for three months which left me feeling quite satisfied. I had my first threatment @ the six week mark friday and I'm super excited about feeling better soon. With my new rheumy, I've had test to determine my organ and joint damage, different scans, immunizations and an order for a blood draw before each infusion. I feel like I'm in great hands now. If you are not getting the treatment you deserve with this disease find a new doctor. I have to drive 30 miles and do not mind a bit. This new rheumy is also an internist which makes me feel good. He believes I am only about 30% currently, but feels I can and will get a lot better!! I hope all of you find the care you so deserve.


I’m glad you’re getting better treatment…the first step is always to be treated with respect by clinic staff but I have seen it myself that some staff seem to have a God complex!

jeez. you've had quite a go of it. glad you were able to get the attention and treatment you need. and a big "boooo" to staff who are hard to deal with.

Thanks Ladies, it means alot to be supported here. It was unbelievably upsetting, especially knowing how patient and nice I remained. The office manager told me if I didn't like their policies (3 to 4 weeks they are allowed to submit the approval to my insurance) that I could find another provider. I literally broke down in tears, explained again how severe my condition was and told her that last thing I wanted was to switch providers. My husband was furious and phoned her to "gently" remind her that SHE was not my provider and insisted I get an appointment with the doctor, as the ER advised me to see the rheumy within a week, so she could look at the worsening of my condition. She refused to give me an appointment sooner than two months down the road. I'm considering contacting the hospital patient advocate and medical society to file formal complaints, I'm just not sure its worth the upset, but would love to prevent others from the experience. Thanks for your input and have a great day. Heather