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@mzamyl

I also am struggling with tapering. I started in November when I was diagnosed at 10 mg of prednisone. That was a big improvement for about a week and a half until it started to feel like it was losing efficacy. My rheumatologist bumped it up to 15 mg and that was really wonderful. I had a little energy again and things felt possible. I stayed on that until after Christmas and then he began to push me to taper. I had 2.5 mg tablets so I cut them in half and I was OK at the end of January at 8.75. At the end of February I was down to 7.5. I felt some of the pain returning especially to my shoulders and biceps. I stayed on the dose until the middle of March when I noticed that after scratching my arm because of cat allergy I had broken a bunch of blood vessels below the skin. That had never happened before and I was scared. I read on this board that that can be due to long term steroid use. I went down to 5 mg immediately, skipping the 6.25 next drop. At 5 the pain is pretty brutal. I have a difficult time even dressing myself because reaching behind my body to pull up my pants it’s a real exercise in pain. I visited my regular GP Today to get my thyroid levels checked. I also have Hashimoto’s thyroiditis. I had to ask a friend can you drive me and push me in in my transport chair. My regular GP was surprised that I was even still on steroids at all. I am feeling sort of hopeless. I’m going back up to 6.25 to see if it helps. It was so nice to have relief from pain for a little while, but difficult for my body to give it up. I have also tried to follow some of the menu changes. I am 70 years old but I am still working because that gives me a sense of purpose and something to keep my mind active. At least I can work remotely from home so I can go in my own pace.

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Replies to "I also am struggling with tapering. I started in November when I was diagnosed at 10..."

@mzamyl, I'm sorry to hear that the tapering has really been hard for you. I struggled with tapering during my first occurrence with PMR. I'm wondering if you might find the following discussion helpful.

PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

@maryft, @juneh, @aspine, @tsc and others may also have suggestions for you.

Hi @mzamyl, my rheumatologist told me that tapering is a fine balancing act. A doctor friend explained to me that prednisone is needed - with PMR and GCA - to calm the immune system, which is attacking the blood vessels and veins. Also prednisone stops adrenal function which is why the taper has to be gradual - to let the adrenals start functioning again. I've had strange bruising and thinner skin since being on prednisone, but skin also thins as we age. I'm 71. In less than a year, I've tapered down from 40 mg (for Giant Cell Arteritis) down to 3 mg, but on 3 mg the horrible stiff neck was coming back, so I just very reluctantly went back up to 4 mg. Try not to feel hopeless, this is a process and it takes time. Eventually PMR and GCA go away. I'm grateful we have prednisone to at least reduce the inflammation and lessen the pain. Can you imagine suffering with this disease before there was a treatment? People must have just languished and wished for death.