I had my annual skeletal survey a few days ago. I have osteopenia! That wasn’t there last year. The doctor says it can be from the MM or from the steroids. I don’t have any other details, like where it is.
Osteopenia = decreased bone mineral density, but not as severe as osteoporosis.
It can be fairly difficult to diagnose osteopenia accurately on plain radiographs. First of all, plain films are hideously insensitive to changes in bone mineral. One must lose 30 – 50 % of the bone mass before it can be detected on a plain film.
I have Multiple Myeloma (MM) and am an advanced practice RN. Living with MM can be a real challenge even before metastic activity. I am plagued with intractable anemia and without Procrit or transfusion therapy I would not maintain a viable hemoglobin. I was on a clinical trial with Mayo Clinic using Anakinra until it came to an abrupt end caused by the drug company pulling out. My insurance refuses to cover either of those above drugs resulting in marked changes in my bones in the last year. I fear without help to get my Procrit and Anakinra that my future is quite bleak and it seems such a shame after the fight I have put up for the last 9 years. I don’t understand their reasoning of the cost being too high when the cost for the lack of therapy for both far exceed the costs that will result for the ensuing complications. In less than a year my bones are showing osteopenia for the first time and “questionable” changes in my spine. It seems a shame that I pay for two health insurances and still can’t receive my health care. It kills me that I pay for a PPO as I face a very bleak future for denied much needed health care benefits. Do you have any suggestions?
That’s a terrible situation to have to endure, on top of having myeloma.
Does your insurance company have an appeal process? Could your doctor get involved in trying to help? Maybe write a letter of medical necessity?
Does your state have an insurance commissioner you could call to ask for help?
Could the trial drug be given to you on a “compassionate use” basis?
Did you ever get any help with this? What about compassionate use?
I heard a presentation by a renal dialysis RN today. I asked her afterwards if they ever see MM patients. She said they see a lot of MM patients.
I asked what my friend with MM can do to avoid this ever being necessary. She said it’s good to have the meds evaluated periodically for side effects. But, she also said you have to treat the disease. That’s a priority.
I’ve talked with medical pharmacologists, too, in the past few months. The one I spoke with most recently said it’s good to have meds evaluated every month. That seemed like a lot. I don’t know if she was referring to a specific setting, like people in hospitals or institutions who are having meds changed constantly, or if she meant anyone taking medication should have it evaluated that frequently.