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← Return to Temporal Arteritis, PMR, RA
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Hi Bev
I had PMR and subsequently GCA going back to 2013. I am still on prednisone 7 mg for my adrenals. In addition in 2017, I was part of the trials for Actemra. I have been on and off with Actemra for years, having to stop it with an infection, or the use of antibiotics. I did not have a problem with Actemra and taking shots myself bi monthly. Never had a reaction from the biologic. It is very helpful and I am of the opinion that if I didn’t have so many relapses, and had the biologic from the beginning, I would not have the results of long-term use of prednisone. Although prednisone is a lifesaver, it has done tremendous damage to my skin, which is now like crêpe paper and cracks and bleeds amongst other issues that I do not want to get into. I hope my response helps a bit. I am also 81 years old.
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@marilynredder2367, and all...Thank you for sharing. I've been on various levels of Prednisone since I was 40, 1st diagnosed with Sarcoid. I have horrible results of long-term and high-dosage use - skin issues, bone deterioration, belly the size of ...., I've lost 4" in height, internal issues, and more...pretty much every side effect available. I have a love/hate relationship with this medication. It saved my life and has helped me multiple times to recover from the pains and debilitation of several autoimmune diseases, so I take it with every hope and prayer it will do its good for me. I'm also aware of the negative aspects of taking it and am hopeful the doctor will be able to prescribe a different but helpful replacement. I'm also going to ask him to prescribe hydroxychloroquine with the Prednisone. I understand it can help us to taper off the Prednisone more quickly and help with the PMR and GCA. Have you tried that?
I don't know if it's possible now with the additional diagnosis that's a serious form of vasculitis. I hope he'll have good answers and perhaps the Actemra will help me. I see him next week, thankfully. My kidneys are showing high protein, so they're unhappy, as are my lungs and the rest of my body, I suppose.
I hope you do well. I think you're right about the biologic earlier use. It wasn't available for me of course, so it'll be interesting to see if now is the time. I'm determined to do well, get better for at least some good days, and complete my home purging and de-cluttering. My focus now is to enjoy my days left and complete this home-clearing project to ease my son's problems.
Blessings, Elizabeth