Any Tips For Tapering Off Prednisone?

I will keep you posted after my visit with the rheumatologist. Hopefully, I will be down lower with my prednisone. Wish I could get all my appts at once. How do manage to do that?

@besmith57
Sometimes I get lucky and I’m able to get maybe 2 appointments on the same day, but usually that’s maybe one doctor and a special procedure (ie-mammogram) appointment! I do get multiple lab orders from different doctors, and sometimes I do them all at once rather then separately before each doctors appointment. They usually share all the results anyway. Honestly, I get phone call reminders every week from my health insurance provider and it gets old!! 😂Example: it’s time to get your diabetic foot exam, time for your mammogram, time for your flu shot, upcoming appointments, etc,etc!!!😂
I know it’s a good thing to be reminded, especially of upcoming appointments, but I literally get 2 or 3 reminders regarding the same appointment!
Despite all this I wouldn’t change my provider— I worked for them for 20 years and deep down I love the way they do things—they are very much into preventative medicine, but are still very current on all the latest therapies and medicines!

Feeling the same way after over 2 years at 5 mg. Got to 3 mg at one point for a few months then hit a wall and had to go up for a time. Back to 5 again and body not in any shape to try and drop dosage. Has anyone heard of using CBD to help with the pain? I'm presently on Methotrexate and after reading the possible side effects I sometimes wonder which is the worse of the two evils? Any feedback or someone who has tried CBD would be appreciated.

I haven't tried it but my sister used it for RA pain until she had open heart surgery and now doesn't even use the gummies. It did help her pain though.

I am glad you like your doctor. I'm not a big fan of my pcp but I'm afraid to switch within the same office. I try to get all blood work done at the same time too. Seems like we have to get blood work quite frequently. Lol I like the text reminders of upcoming appts too. But you are right about how many times they send reminders. Hope you have a great day!

"I hate to say this - my endocrinologist said I didn't need to taper prednisone from 3 mg to zero as long as my cortisol level was adequate. So much for slow tapers ... I guess."

Addendum to the above. I'm getting into addendums.

My endocrinologist also said she didn't know what would happen if I decided to stop taking Prednisone. There was no way to predict what would happen but I think she was more concerned about adrenal insufficiency. My cortisol level was adequate on the day it was tested but might not be adequate every day going forward. She said it was my choice but she strongly encouraged me to "give it a try."

There were competing voices that said I should stay on Prednisone for the rest of my life. My endocrinologist said I could always go back on Prednisone "if I felt the need." My endocrinologist said lifelong Prednisone was not a good outcome.
@jlo2252
You might appreciate what happened next more than most.

After I tapered off Prednisone the first time, there was a need for 60 mg of Prednisone again because of a massive flare of panuveitis. It was my first uveitis flare in 15 years. A different biologic (Humira) was tried which probably worked for uveitis but my PMR symptoms returned. I was stuck on 15 mg of Prednisone again until Actemra was restarted.

It was a temporary setback. I was able to taper my Prednisone dose from 15 mg to zero in 3 months the second time Actemra was tried.

... you are right about how many times they send reminders.

I get text messages, automated phone calls and postcards in the mail to remind me of my appointments. That doesn't include the email I get at the beginning of the week that lists my appointments for the week and the upcoming month.

@dadcue
😂😂😂yes , I forgot to mention the post card I get in the mail as a reminder!
Can’t really complain, I worked for Kaiser Permanente and I have excellent insurance through our negotiated union contract with $5 co-pays for most services, even medication ..

If I'm not mistaken, I think @redboat had insurance with Kaiser Permanente.

I know for sure his case of PMR was very severe with extremely high inflammation markers. He was on Actemra and had a good initial response. Maybe he will see this and give us an update.

I have been on Actemra for more than five years. I'm getting nervous about being on Actemra so long.

I had a small copay when I did Actemra injections. Now that I do monthly infusions, there is no cost to me through the VA. I'm very grateful for the VA.!

The doctors from the University Hospital where I worked and received my health care for 30 years staff the rheumatology clinic at the VA. I have limited contact with the rheumatologist I had at the University for nearly 15 years. I could still contact her if I had any questions or concerns.

I only switched to the VA when I retired.

@dadcue
So glad that you are finally off the prednisone because of the Actemra. This gives me hope for my own fight to get off prednisone! Here’s hoping you will now be free forever of uveitis! I only had it once and I just remember them putting three different bottles of eye drops in my eyes and it was a painful experience 🥲
Sounds like you have great health insurance! It’s so good to have that confidence in the people in charge of your health.
Have you discussed your concerns about being on Actemra for so long with your doctor? When you have medical training like yours it’s so easy to think the worst! I know I’m like that sometimes and at times this can make me a difficult patient, although I really try not to be! 🙂