i can't be the only one in this situation- so wondering what others do
I was diagnosed with both RA and hlab27+ AS- when diagnosed, I was put on methotrexate, sulfasalazine, something with a P- then advanced to Humira- it did work for 11 months until I developed antibodies- they tried adding methotrexate but it didn't work. Was then put on enbrel. which also didn't work- so they put me on Remicaide Infusions. The Physician Assistant decided to add Prolia for osteoporosis (injection) while I was still on my loading doses #2 of the Remicaide and it completely knocked out my immune system- I was so sick for 2 years- I had to see Hematology/oncology, infectious disease and my primary who all told me I would no longer be a candidate for those meds. So I stopped going to rheumatologist. However, my pain doctor and neurology both insisted it was important for me to see rheumatology so I went back. I explained all of this to her as I did here- However what she put in my chart- did not include anything at all like I stated above- Instead, she wrote, that i currently didn't feel bad enough to go back on biologics?!? Which is upsetting enough, but i am also on disability and the judge will be reviewing my records- this is NOT accurate at all- In addition, even if I felt like it was an option for me, once you are on Medicare, you can nolonger get the patient assistance to cover the cost of the meds which is at least 800.00 a month. I am sure I am not the only one who has faced similiar circumstances and I am looking for information about how to approach this.
I am so sorry these complicated issues have presented themselves. In addition to the pain, this must be overwhelming. I cannot answer questions about what you should do, but I will tell you what I would do.First, a bit about me, I am on disability and have been down this twisted a few times. Here is what I suggest. First, I would go back to the doctor to correct the record. Doing this in person will be best, in my opinion. I would let the doctor know that you are having a tough time and want what she suggests to help out. I would be both transparent and willing to accept her direction. Often, if s doctor knows you have failed one, they will still move you along to a different medication.
Second I would find a good disability attorney to help with your case. For the most part, you can expect 4-7 denials before it is ever approved. An attorney on your side will lessen that time frame and your anxiety. The attorney will be paid out of the settlement payment that will be delayed while SS adjudicates the case.
You are correct about the way biologic fees are charged under medicare. However, if one uses a SS pharmacy plan or if you use infusion, the price difference can be profound at any rate. You can continue to use manufacturer discounts until you are accepted. I would be surprised if SS does not take up to two years to make a final decision.
So I would suggest there are many steps before this thing is decided. As my attorney told me, this is a one bite at a time elephant. So do not try to swallow the whole thing at once. I liked that guy.
