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Hi @neztrop, I am so sorry to hear that you have had problems with tapering, but that you have started on Kevzara. I also had difficulty with tapering and am on Actemra due to suspected GCA. I have been taking weekly injections since mid December and I am starting to really feel the difference despite a two week period with no medication due to a pharmacy shipment issue. My doctor recommended that I hold tapering until the medication started to work and that I also delay when my shipment was missing. I think that was wise advice since tapering is counter productive when you are in active disease.
I definitely think you should mask, when in close contact with patients, when flu and Covid are active in your community. I ended up retiring earlier than anticipated (age 63) due to PMR pain. My daily waking pain was significant so I basically started over every morning. I have learned that stress also has an impact on the severity of the PMR symptoms so you must factor that in too. My husband strongly encouraged me to retire and we were in a financial position for me to make that leap earlier than anticipated. With the hiccups that I have had with tapering, I am grateful to have done that. I am praying that your answers are crystal clear and that you remain healthy to fully recover from PMR. Let us know what you decide and how you are progressing. Blessings! ❤️
Replies to "Hi @neztrop, I am so sorry to hear that you have had problems with tapering, but..."
Thanks so much for sharing your experience. I’m also 63 and am down to PT work, wondering how long/if my PMR will make that too difficult. I’m not 100% able to stop working so it’s a push to keep going some days. I will be masking at work and around the community. Hope all is going well with you. Thanks again
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"I think that was wise advice since tapering is counter productive when you are in active disease."
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I agree with this and especially when prednisone doses are less than 5 mg. The adrenals also need time to start producing cortisol again. An endocrinologist told me not to consider tapering less than 3 mg when my cortisol level was too low. It was difficult to stay on 3 mg and not increase my prednisone dose. However, it was much easier with Actemra because I didn't have a flare.
There are two things to consider. 1) adrenal insufficiency caused by long term prednisone use and 2) a recurring flares of active disease. It is double trouble when our prednisone dose gets lower. Actemra made it easier for me --- it kept PMR in check and allowed me to stay on low dose prednisone long enough for my adrenals to recover.
For more than 12 years I tried to slowly taper off prednisone without Actemra and I had no success. When Actemra was tried it was much easier. Now Actemra keeps all my autoimmune conditions in check and I haven't needed any prednisone for 5 years. Actemra doesn't suppress my adrenal functions and no discernable side effects for me at least. Currently, remission is being maintained with a monthly infusion of Actemra instead of Prednisone. My endocrinologist thinks my adrenals have recoverd since I haven't needed Prednisone in a long time. I feel infinitely better being off Prednisone.