I've been trying to taper my prednisolone and take an injection of Actemra each week. Right now 8 mg seems to be my sweet spot and my rheumy here in the states was having me reduce by 2mg per week. I was on 60+ in December and with the exception of when I hit 8mg and stayed on it for a month, it was dropping every two weeks. I got down to 4mg, 2 in the am and 2 in the pm and the pain started. I called the Doctor and went to six, no change in temple pain and my jaw was much worse.
Because of what I have seen on the forum and the confidence in kind of 'taking charge' of my own care I wrote to him and said I wanted to go back to 8mg, I wrote about that exchange in a post previously. After about 5 days on 8, it really made a difference. I know he wants me to taper so...............
Today I sent him an email and laid out the format that I have seen on the forum of one level three days a week and the lesser amount on the alternate days. I said that I felt my body would more likely adjust better at a slower pace but also told him I don't care if I take a low dose. He agreed and is calling in scripts for me to have my own 'stash.'
I feel like I have PMRGCAuk tattooed on my arm....I'm tapering UK style and I'm so much less anxious. I'm at one eye dark and the other eye not too sharp anymore so I'm thrilled....love you all~!! I'm marching with you all👨🏿🤝👨🏿👨🏾🤝👨🏻👨🏾🤝👨🏼👨🏾🤝👨🏽👨🏾🤝👨🏾👨🏿🤝👨🏻👨🏽🤝👨🏻 As my grandson would say, you are dope!
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Grammy80
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Thanks, Jane...you are so right! The feeling that he is listening to me and HEARS how I feel and letting me have a role in my tapering is very empowering!!💪🏻 YES!
I am also on Actemra, but my Rheumatologist has set out a taper of 1mg every 28 days. This week I reduce from 7mg to 6mg and I have a telephone consultation with her, so will discuss what the taper should be from here. She always listens and hears what I say.
Well done for being in control of things and glad that you are feeling empowered and less anxious. 💐
It is a good feeling when you have some say in your care, and that your docs are listening to you. They want you to feel better, get better too !
Since I am fairly new to the site, can you or someone post the forum or link of the alternate ways and days of tapering prednisone and it’s affect on our adrenal function ?
I am also at a 4 mg taper, and in my fifth month of Actemra subcutaneous injections.
Have had some uncomfortable moments...
This site has been such a helpful learning tool.
I’m in the States, and I haven’t found anything else like it.
I don't think there is anything else like it in the states....this group was the only support I found. PMRGCAuk provided information as well as emotional support. When I read posts from people going through the same thing I was...and explaining it so much of my anxiety went away. I was still a bit afraid of what was down the road but I never took another step 'alone'...and that was key. I had caring folks I could ask and get answers to questions that really had not come up in my life yet. As time went on and I hit speed bumps I saw how they handled them which gave me the courage to present alternatives to my doctor, rheumy.
So happy you found this site also, SuZus....it will make a world of difference for you I know!! 💖💖
I'm so happy for you Suz, it sounds like you have a lot of great things going for you...plus an amusing psychologist who you don't have to pay by the hour~!!
Let me know if you folks ever decide to rent a room~!!
Many blessings to you...although it sounds like you have lots of company leading you on the right road~!!
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