What is the goal when tapering?

Posted by nothatkaren @nothatkaren, 6 days ago

I was diagnosed with PMR in November. Started on 65mg of prednisone. I have now tapered to 20mg, but the pain is debilitating. What is the goal with tapering? Is it to have no pain, less pain, or tolerable pain? At 65 mg, I had zero pain, but lots of other ugly side effects. At 20mg, I can tolerate the pain, but am pretty much disabled if I try to do anything other than sit. I am at a loss, and I just want my life back. Any guidance would be appreciated.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@gmdb

At one stage I went up to 100 mg daily (for 5 days only) then down to 50 mg for a longer period to treat the rising inflammation of CRP (well over 100). It looked like I was starting to develop GCA symptoms and it was decided that hitting it hard was the best option. There was no formal diagnosis of GCA and no biopsy - I think largely because the high CRP told the story. It was a successful approach and possibly quite common. But tapering is hard and slow and I'm not eligible for Actemra as I don't have a GCA diagnosis. Coming up to nearly 2 years with PMR and after 18 months of methotrexate it see,s to have stopped doing anything at all, but make me feel worse for a day or so after taking it.

Jump to this post

"My understanding of the initial tapering is that there is an assumption that the starting dose of prednisone is likely to be too high. But it should mop up any accumulated inflammation and significantly reduce the impact of new inflammation being generated daily."

"At one stage I went up to 100 mg daily (for 5 days only) then down to 50 mg for a longer period to treat the rising inflammation of CRP (well over 100). It looked like I was starting to develop GCA symptoms and it was decided that hitting it hard was the best option."
--------------------------
I'm sorry that you needed such a high dose of prednisone.

My ophthalmologist also told me to increase my prednisone dose to 100 mg more than 30 years ago but it wasn't to treat GCA, It was to treat uveitis which can also cause vision loss. There was no "mopping up" of all the accumulated uveitis inflammation with 100 mg of prednisone. The inflammation inside my eye decreased somewhat but I still couldn't see my hand in front of my face because of all the inflammation.

With uveitis you can actually see the inflammation inside the eye. I could see it and my ophthalmologist could visually see it. There was no need for inflammation markers. The inflammation didn't respond to prednisone like the mopping up analogy. I wish it was that simple.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
------------------------
Prednisone is used for a wide variety of inflammatory diseases. Rarely do these conditions respond rapidly to prednisone in a way that is thought of as remission. For PMR/GCA prednisone doesn't rapidly achieve remission either. The majority of the pain is relieved but that doesn't mean it stops the inflammation even on the day when prednisone is taken.

When my PMR was being treated, my rheumatologist was aghast that my inflammation markers were still elevated on 25 mg of prednisone after two years of treatment. For this reason, my PMR was called chronic and refractory and it never did "burned itself out." However, DMARDs and other things were tried so I wouldn't need so much prednisone.

REPLY
@jeff97

Thanks @ropnrose for your kind words. I have learned a lot from the people on this forum.

I was fortunate that my rheumatologist encouraged me from the start to take Actemra.

I haven't actually thought that much about getting off of Actemra. I assumed at some point, probably around 2 years, that I would taper down and stop needing it. But I have no idea if that's a realistic assumption. I'm seeing my rheumatologist tomorrow. I'll ask what he thinks is most likely.

Jump to this post

I saw the rheumatologist's PA today, and I asked her how long people with GCA usually take Actemra. She was definitely not encouraging about getting off of it. She said GCA isn't like PMR where the PMR burns itself out. She said the likelihood and risk of relapse on GCA is high enough that people have to keep taking Actemra long term. I just googled that question, and it says the typical duration of Actemra is one year. So I'm not sure which answer to believe.

REPLY
@jeff97

I saw the rheumatologist's PA today, and I asked her how long people with GCA usually take Actemra. She was definitely not encouraging about getting off of it. She said GCA isn't like PMR where the PMR burns itself out. She said the likelihood and risk of relapse on GCA is high enough that people have to keep taking Actemra long term. I just googled that question, and it says the typical duration of Actemra is one year. So I'm not sure which answer to believe.

Jump to this post

The National Health Service in England restricts the use of Actemra to treat GCA to one year. Based on a survey, maybe people with GCA in England would like that to change that restriction.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
-----------------------------------------
Google doesn't even list the duration of Actemra to treat PMR because it isn't FDA approved for PMR. Google just says the duration is variable depending on the conditions being treated.

I don't know where that leaves me because I'm into my 7th year of Actemra for PMR. There were a couple of interruptions of my treatment with Actemra that weren't good. I think my rheumatologist is only considering how well I tolerate Actemra along with how effective it is for me. Compared with my 12 years on prednisone, my Actemra years have been very smooth sailing.

I have a colonoscopy scheduled in August. I'm worried they might find diverticulitis which could mean I would have to stop Actemra. I didn't have diverticulitis 10 years ago when my last colonoscopy was done. I think I might cancel the colonoscopy.

REPLY
Please sign in or register to post a reply.