Oh, where to start?

I was diagnoised about 5 years ago with Psa. since then it has been a constant search to find a medication that works. I was started on sulfasalazine with no luck, then moved on to embrel, humira, simponi, remicade and now cimzea. along with all of these I have been on mtx and plaqunil the entire time. the only thing I have had much relief with was the remicade, however insurance will only pay for it every 8 weeks and I needed it every 6 weeks. I have an appointment with my rheumatologist next week and was hoping someone would have some ideas of any other medications I could discuss with her. the swelling and pain is so out of control that I am at my wits end. I am still working full time and taking care of my family but somedays it is a struggle just to get out of bed.

Welcome here, Pink! I hope you find this a good place for support and information. Please check out the Newbies’ Guide section of DISCUSSIONS – a great place to start. I’m sure you’ll be able to relate to “When “tired” doesn’t begin to describe it …”

As for medication ideas, there are new meds coming out regularly. Stelara is one of the latest which has approval for PsA. But your rheumie will know that. Hang in there and keep kissing the frogs until you find your prince of a drug!

Glad you found us!

What about Orencia? It’s helping me although I have had to restart the methotrexate much to my dismay.

Hey pink!
So sorry you’re having a tough time. I hope you can find a path through all this with your doctor. Sometimes it take time to find the right cocktail. And sometimes it is a moving target, too. Something that works well might need a boost if you’re in a flare, or it might not seen to work so well when you’re fatigued or stressed. It is really frustrating to not have quick answers and to feel like you’re at the mercy of a bureaucratic decision. Just know you’re not alone and we are here to support you as you move forward.

Keep fighting the fight. One of my favorite weapons is a nap!

Thank you all for your support. after reading other stories on here I now don't feel like I am going crazy. I have a doc. apt. this week so I have a lot to discuss with her. went fishing with my husband yesterday and I am really paying for it today. hands are so swollen I can barely move them, but the fish dinner last night was worth it. hope everyone has a wonderful holiday weekend


One thing that jumped out at me in your post is that Remicade works for you, but you need it more frequently than insurance will cover. Has your doctor contacted the insurance company on your behalf to try to get it covered? All it took for me (I go every five weeks) was one phone call from my doctor.

Whatever happens, I hope you find relief soon. It takes way too much work for us to get what we need medically sometimes.

argh....that is so frustrating. If you insurance will pay for every 8 weeks will it still help if you have it every 8 weeks instead of 6 ? Just wondering and thinking maybe part way is better than nothing ?

I hope your doc finds a solution for you. I'm sure he/she will. There are more options out there now. I don't remember them but have seen some mentioned here that I've never heard of.

I know what it's like when the pain is that bad and struggling to do everything. Is your next appointment soon ? Good luck !

I want to add to what Nym said. Your doc can write a letter of medical necessity to the Rx insurance company. Many times, they will cover drugs when this document is provided. I was able to get Humira approved for an off label use just last week for a patient of mine by filing and appeal. Please try that, specially if Remicade was working for you.

We have appealed to the insurance company twice now and they still refuse, saying there is " no medical necessity or therapeutic benefits" to having it more often then every 8 weeks. what is really frustrating is this is insurance that I have thru my employer that I pay for. I have an appointment with my doc tomorrow and with any luck she will have come up with a plan of action. after working 13 hours last nite I am sitting in my chair today not moving. I want my life back