Medication Denied
Just looking for some advice. In addition to lupus, I’ve also been diagnosed with congested heart failure, hypotrophic cardiomyopathy. Afib, and pulmonary hypertension. For years I was on plaquenil . About two years ago my doctor called and told me to stop it immediately because of a report she’d received from my cardiologist. I have been in constant pain for the last two years. Finally my doctor prescribed Benlysta a specialty med that requires prior authorization. Twice I was denied because the insurance company feels the medication should be taken in addition to placquenil. My doctor sent a statement explaining why I could not take it but they still would not give approval. So I am just left to suffer. I take Tylenol Arthritis every day but it does not help a lot. Is there anything else I can do? I am 63 and I have legal custody of five grandchildren, ages 3, 5, (2) 14 year olds and a 15 year old. The 5 year old suffers from fetal alcoholic syndrome and one of the 14 year olds is autistic. There is no way I can continue to do the things I have to do feeling like I do EVERY DAY.
, I am so sorry you have been dealing with so much pain and opposition for this long. It is an unjust system that the insurance companies will not support your treatment needs, even with doctor support! I'm not sure if you have ever thought about trying to add some alternative treatments into your routine to see if they help at all? Everyone is different, so all of these may not be the perfect fit for you and your life, but may be worth trying out: https://lupus.net/complementary-alternative-medicine Hope this helps provide some relief!
Sending gentle hugs,
Gabby (team member)
I'm sorry that you are dealing with so much. I am sending you gentle hugs. I have been on Benlysta for some time. It was created to be used in conjunction with an already established treatment. It doesn't necessarily need to be plaquenil but other lupus meds ie celcept or immuran. Also, some of the side effects of Benlysta may cause some heart issues so that may be a reason for denial. Has your cardiologist talked with your rheumatologist to try and come up with a effective treatment plan that won't have too many effects on your other medical issues? I know it's so frustrating to have to fight for treatment it can get so overwhelming. ~Racquel ~ lupus team member 
So sorry to hear about your struggles. I too have heart failure, left bundle branch block and cardiomyopathy associated with lupus. I had to have a pacemaker put in. I take colchicine, plaquenil and have tried what seems like every infusion there is with no relief. If my cardiologist hadn't suggested the pacemaker I'm not sure where I would be because lupus was causing my heart to fail. Wondering if your cardiologist has suggested this?
