Hi Nympha,
Sorry to learn about your Mom's trials with our dumb disease. Here are a few thoughts for you...
1. Your Mom needs help from a weg's expert. Encourage (demand?) your local doc to consult with a Vasculitis expert. They often provide free consultations. You can get a list from the Vasculitis Foundation's website.
2. Methotrexate is usually used to maintain remission and seems to be less successful at inducing it. Rituximab or cyclophosphamide are the drugs used to induce remission and/or knock down kidney involvement. Rituximab is frightfully expensive, so you and your doc will need to work with your health insurance company to get preapproval. As an example, my two infusions carried a list price of $20,000 each. With insurance, my copay was $20 each. Genentech may provide some help if you don't have insurance.
3. Prednisone is a drug that we weggies have a love-hate relationship with. It makes our appetites go crazy resulting in weight gain and sometimes Cushing's disease (moon face and/or buffalo hump). It also causes our bodies to leach calcium leading to osteoporosis or osteopenia. I take calcium supplements to combat this.
4. Some of your Mom's hearing may return once the disease is under control and the infection is healed. I had to get hearing aids to help me hear better -- unfortunately, not normally. She should see an ENT to assess damage and see what can be done.
Let us know how she does. Btw, I'm 68, and have been fortunate in that I've been able to recover from this. I'm fours in since diagnosis. The best advice I've gotten is from the doc who diagnosed me: Take your meds as directed and live life as best you can. It's a one step at a time process.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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