Agressive RA and related lung disease.

By Al219 Latest Activity March 1 at 9:29 am Views 699 Replies 2

Al219

I was diagnosed with RA over 12 years ago, have tried many meds. For 5 years was on Enbrel and almost symptom free, then went on medicare and funding was no longer available. Several other medications were tried including infusions which lowered my immunity to zero and gave me a near fatal infection. After that for a year I was just given opiates for RA pain. Eventually went on Cimzia injections given in a doctors office so Medicare would pay for it. Had amazing results for several years. Until I had to go on Esbriet for lung problems. Even though I had several doctors attest that continue Cimzia was not contraindicated, regular rheumatologist refused to continue giving me injections. I tried to get funding for self administered injections but was refused unless I wanted to pay and large co payment which I can not afford. Trying to find an alternative medication, but prospects are poor. Recently had blood tests CCP reading 200, ESR 60 and high RA factor. Please do not suggest any special diets, vitamins, herbs etc. Tried them all in desperation with zero success. Also funding agencies such as Healthwell foundation and others.
I am not looking for sympathy but rather writing this to warn others of problems getting proper medications when on Medicare…

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  • Dr Gary
    Dr GaryCA March 8 at 12:16 pm   

    HI! I am therapist, not a physician, so I don't have any helpful advice on the medical side, I am sorry to say. I really appreciate that you shared your story here. I know you aren't looking for sympathy but, nevertheless, I am sorry to hear what you are going through. It always saddens me to hear when people aren't getting the care and treatment they need. You have probably already considered this but I am wondering if it is possible for you to get a second opinion from another rheumatologist. This might help for you to make the case for continuing with this medication. Sounds like you are advocating for yourself here. I hope you will keep in touch with us and let us know how you're doing.