I was diagnosed in with PsA in February. My mother has MS and her mother had MS (a demyelinating disease). For that reason Rheum said biologics such as Humira and Enbrel are out of the question as they increase the likelihood of developing demyelinating diseases. Started Sulfasalazine in Feb but it wasn't helping so the Rheum added Methotrexate injections. I also have terrible GI issues and the Sulfasalazine was not tolerable so for a while I was taking just the MTX injections. I was having strange reactions after the shots though and come to find out I am allergic (or at least sensitive) to the preservative in MTX. So..stopped that and switched to oral MTX at 6 pills per week. Jumping ahead a couple of months, I am up to 10 pills a week and still my joint pain/swelling in getting worse rapidly (and my stomach is killing me). Today I saw the Rheum because my wrist is making it nearly impossible to do my job. Pain in my hands, back, elbow and wrist make it very difficult to sleep. Anyhow (and I'm sorry for the scattered post but I've had it today!), she gave me a Depo Medrol shot to try to get me over this terrible time and we have decided it's time to bring out the big guns. So, she really wants me to start Orencia ASAP. She said it has not shown the increased risk of demyelinating diseases as other biologics. The problem is that it isn't FDA approved for PsA, only RA, so most insurance companies put you through hell to try to get it approved and often won't in the end. The Rheum says though that she has patients who take it for PsA with good results. I'm just wondering if any of you have/are taking Orencia for your PsA. If the insurance company won't approve it I will start Humira despite serious reservations. Thanks for your support and advice!
Sorry you're having a difficult time, Heidi. I'm 3 months into Orencia for PsA with no luck thus far. I failed Humira & Enbrel. So, currently my regimen is Orencia infusion, inj. MtX, celebrex, leucovor, flector patch, a ton of vitamins and some pain meds. My doc said the Orencia could take 16 weeks to work...I'm not impressed since my hands/wrists, feet, elbow, shoulders and spine are rendering me useless. My insurance covers it since I failed 2 others but I'm not sure whats left if this Orencia doesn't kick in. The good news is I have never had any side effects from it...well no effect at all.
Hi - Thanks for your response. My Rheum did say that Orencia takes longer to start working than the other biologics. Hopefully you get relief soon! That's why she's so anxious to get it going ASAP. Do you mind if I ask who you have for insurance? I am in CT and have Aetna. I found a document online that says Aetna considers Orencia experimental and not medically necessary for certain conditions, including PsA. That makes me think they are unlikely to cover it. It's been a week and we haven't gotten any response from the insurance company. If they won't cover it I have to make the hard decision to take Humira despite the strong family history of MS and risk of developing a demylinating disease. It's not right. I'm still hoping they will approve it - though at this point I just want to say screw it and stop taking everything - just let what happens, happen, ya know?
You simply need to ask your insurance company for a letter saying they will assume responsibility for any MS you develop as a result of their Protocol for treatment. As they have decided they are better able to practice medicine than your Physician, they should take full responsibility for your treatment. You might also refer them to this study:
You might also contact Bristol meyers and ask them the state of their application if necessary. They also have some additional studies being done, you might ask if you can get in. The only thing better than good drugs is free drugs
My insurance is Blue Cross Blue Shield of Texas. They listed "infusions" as not covered but my Nurse submitted some pre-authorization stuff and got the Orencia approved. It did take 3-4 weeks though.
I too have had a few moments of wanting to just toss all my meds and wing it. It gets really frustrating spending tons of money and time, pumping our bodies full of drugs and still not finding relief. We just gotta keep going and don't stop.
After about 3 months I started to notice improvement with Orencia. (I didn't realize how good I was feeling on the Orencia until I had to stop it!) Unfortunately, I came down with Shingles twice in the first 4 months on Orencia so my infusions are currently on hold. My doctor decided to hold the Orencia for 3 months so I can get the Shingles vaccine. While the vaccine will not guarantee that I won't get Shingles again, it will supposedly reduce the likelihood of getting Shingles again and decrease the likelihood of the long-term nerve pain that I've had trouble with (if I do get Shingles again).
I hope that your doctor is able to get it approved. I have been lucky in that both my previous and current insurance carriers approved it.
One thing to keep in mind is that improvement from Orencia generally takes 3 months or so, unlike Humira and other biologics that act more quickly.
I jsut found out that I have been turned down for Orencia by my insurance company. I have tried enbrel but it did not work that well for me. I developed bad side effect from Humira and had to be taken off of it. I have been off biologics since December. Doc wants to put me on Orencia since it is not a TNF and should not affect my platelets like Humira did. Specialty pharmacy that the insurance company dictates I use for the biologics told me to contact my doctor. My question is: Is there anything that you did to help expedite this process? I would rather not wait 3-4 weeks to start as I have developed some bone erosion since being off biologics. Thanks for any help.
Hi, So sorry to hear about your troubles! A woman at my doctor's office actually handled the whole process for me. All I had to do was sign a form. I hope that you get it approved! See if your doctor's office has someone who can advocate for you. Good luck!
I heard back from my doctor who is now thinking I should try Remicade. This is by infusion which I would prefer not to have, but if I have to.
I have taken lamb's advice and called brystol myers. Got through to the Orencia line and they referred my to their customer relations line which would have more information on studies. They are closed now. Hopefully I will find out more tomorrow.
I have no experience in getting insurance approval for any drugs. I wonder if the Psoriasis Foundation may be able to help you expedite the process - just a thought. www.Psoriasis.org I've found them to be extremely helpful and responsive.
TheMatt said:
I jsut found out that I have been turned down for Orencia by my insurance company. I have tried enbrel but it did not work that well for me. I developed bad side effect from Humira and had to be taken off of it. I have been off biologics since December. Doc wants to put me on Orencia since it is not a TNF and should not affect my platelets like Humira did. Specialty pharmacy that the insurance company dictates I use for the biologics told me to contact my doctor. My question is: Is there anything that you did to help expedite this process? I would rather not wait 3-4 weeks to start as I have developed some bone erosion since being off biologics. Thanks for any help.
Find out the steps and the criteria in the approval process. Get the phone number of the pre-authorization department and call them. Ask exactly what the steps are and the criteria. Ask for a written document if they have it so you can study it.
Then work with your doctor to follow those steps and fulfill the criteria. Don't assume right off that it's your insurance company. It may be that your doctor's office didn't bother to follow the instructions, so that's how you can speed things up, but making sure your doctor's office understands exactly what they need to do.
Often the drug company has a patient advocate organization, which will fight with insurance companies to get their drug approved (it is in their best interest to get it covered!). You might check out the Orencia website and give them a call.
TheMatt said:
I jsut found out that I have been turned down for Orencia by my insurance company. I have tried enbrel but it did not work that well for me. I developed bad side effect from Humira and had to be taken off of it. I have been off biologics since December. Doc wants to put me on Orencia since it is not a TNF and should not affect my platelets like Humira did. Specialty pharmacy that the insurance company dictates I use for the biologics told me to contact my doctor. My question is: Is there anything that you did to help expedite this process? I would rather not wait 3-4 weeks to start as I have developed some bone erosion since being off biologics. Thanks for any help.