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@moldy

This is a long story. My PCP diagnosed me with Templer Arteritus and prescribed 60 Mg Prednisone daily, referred me to a non doctor Rheumatologist, who referred me to a surgeon to do a biopsy to determine the possibility of GCA. By the time I was able to get an appt. with the surgeon, over ten days had elapsed while being treated with Prednisone and a biopsy would have not been accurate. So one was not done. My Templer was treated with Prednisone and the swelling disappeared in two days. My Rheumatologist kept me on this med and Paqualine (sp?) tapering the Prednisone down to 2mg daily over 6 months. I felt fine. I was told to stop both meds at the same time to see what would happen. What happened, was I experienced severe withdrawal, dry heaves, stomach cramps etc. She placed me back on these drugs for another 6months and I took control of the tapering and slightly quicker, but right down to the point of .025 every other day for the last two weeks. And then the Plaqualine in a shorter but similar manner over a month. Had no withdrawal problems or flareups of the swelling. At this point, I asked if I should remain on a maintenance program to avoid re-occurrance and was told to just watch it and we would repeat meds as required. Of course, this swelling could kill me if it appeared in an unnoticable place in my body. Over the next few months, I got weaker and weaker to the point where I could not walk 75 feet to the mailbox and back without resting on the way. My blood tests showed infection indicators but no one knew why. After being examined by 7 doctors from various disciplines, I was finally put in contact with a Rheumatologist who is a DOCTOR. After a battery of blood tests, scans, and MRI's she concluded I had Giant Cell. She placed me back on Prednisone for 6 months and then discontinued the Prednisone and started the Actemra 162 mg weekly by self injection. I have been on it now for about a year and a half and have the GCA controlled without the side effects of Prednisone. However, after about a year, it appears that I might have developed a reaction to the Actemra and experience hives on occasion. I just take one Zyrtec tablet which eliminates that. I also take Amlodipine and Rosuvastatin and a baby aspirin daily. Of course, there are no guidelines on how long to keep a patient on the Actemra and if the med will control or cure the disease in a given time. My MRIs are showing great improvement and, depending on the next one, I will probably have my Actemra injections reduced to bi weekly.

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Replies to "This is a long story. My PCP diagnosed me with Templer Arteritus and prescribed 60 Mg..."

@moldy I read your other comments on actemera and you seem to be doing quite well on it. Taking the Zyrtec for the swelling isn’t too much of a problem, is it. Most of these drugs can help patients manage their disease, but they don’t cure them. Currently, most autoimmune disorders have no cures, just long remissions. My AD affects my brain and I can expect to be on mycophenolate forever. Fun!
Do you trust your doctors to help you with your disease?