Initial Dosage of Prednisone Impacts Long Term Recovery

@redboat I'm not suggesting you have reactive arthritis. You have to go with whatever a doctor tells you and I'm not a doctor.

Reactive arthritis is just one type of spondylitis. There are 6 types but that was how they were classified in the past. There has been a new classification system that recognizes just two broad categories.

Peripheral spondyloarthritis (pSpA) typically causes inflammation in the joints and tendons outside the spine and sacroiliac joints.

and

Axial spondyloarthritis (AxSpA) causes inflammation and pain in the pelvis, the spine, or both.

You can also have a combination of both peripheral and axial.

To make it even more confusing ... you can still have PMR in addition to spondylitis.

In my case, PMR was diagnosed about 20 years after reactive arthritis and uveitis. PMR just blended into what was already an inflammatory mess. My rheumatologist mostly referred to widespead "systemic inflammation." and not necessarily any specific diagnosis.

In my opinion, it is the inflammation and pain. that needs to be stopped. I used to tell my rheumatologist that she could call "it" whatever she wanted to. I was at the point where I was willing to try anything.

The biologic I am currently taking was a nice surprise. I like my biologic much better than prednisone. My biologic was targeting the inflammation cause by PMR but it isn't FDA approved for PMR. My rheumatologist just had a hunch that it might work in my case.

There are many biologics that target different things. It is more about finding something that works better than long term prednisone. There is no cure for most autoimmune conditions.

Do you mind sharing the name of the bioloigic? What are different types of biologics? This terms is new to me
My doc has me on LDN along side prednisone. Maybe LDN is a biologic ?

Do you mind sharing the name of the bioloigic? What are different types of biologics? This terms is new to me
My doc has me on LDN along side prednisone. Maybe LDN is a biologic ?

I forgot to mention I had countless bouts of
uveitis that would only respond to oral prednisone, before being diagnosed (10 yrs ago with AS) and starting biologics.

Hi @abbeyc
The biologic I'm currently on is called Actemra (tocilizumab). It has been FDA approved for the treatment of GCA but not for PMR.
https://www.healio.com/news/rheumatology/20210521/tocilizumab-holds-firm-as-steroidsparing-agent-in-giant-cell-arteritis
Some doctors think it is a game changer for the treatment of GCA. There is ongoing research to see if Actemra will work for PMR. If my experience is any indication, I would say it works for PMR. My rheumatologist wanted me to try Actemra because of my 12 year battle with PMR.

I was unable to taper off prednisone for more than 12 years. I started Actemra on January 1st, 2019. I was off prednisone a year later. I could have tapered off prednisone sooner except for having adrenal insufficiency caused by long term prednisone use.

Greetings @saltyg

I hope the combination of Embrel and prednisone is working for you. AS and PMR is a bad mix. Just so you know, my ophthalmologist wasn't convinced that Actemra was optimal treatment for uveitis.

When I first tapered off prednisone after Actemra was started, I had a flare of uveitis for the first time in nearly 12 years. Actemra was stopped while I was taking 60 mg of prednisone and Humira. The uveitis cleared up but Humira didn't seem to control things from the PMR aspect of things.

My rheumatologist said it would be impossible to control everything that was happening to me. He said I could take either Humira or Actemra but not both.

My uveitis has always responded well to high dose prednisone followed by a fast taper. I have stopped counting the number of flares of uveitis I have had. I decided Actemra worked better for me and controlled the pain. I like being off prednisone!

If uveitis flares up again, I guess I will take prednisone for a month or two. At least I won't need to take prednisone all the time.

Hi @abbeyc
The biologic I'm currently on is called Actemra (tocilizumab). It has been FDA approved for the treatment of GCA but not for PMR.
https://www.healio.com/news/rheumatology/20210521/tocilizumab-holds-firm-as-steroidsparing-agent-in-giant-cell-arteritis
Some doctors think it is a game changer for the treatment of GCA. There is ongoing research to see if Actemra will work for PMR. If my experience is any indication, I would say it works for PMR. My rheumatologist wanted me to try Actemra because of my 12 year battle with PMR.

I was unable to taper off prednisone for more than 12 years. I started Actemra on January 1st, 2019. I was off prednisone a year later. I could have tapered off prednisone sooner except for having adrenal insufficiency caused by long term prednisone use.

What do you think of the LDN?

I hear it has minimal side effects, but I'm only aware of a couple anecdotal reports on its use with PMR, one of which is here on this site now.

Thanks. 60 mg of prednisone is mostly stopping my pain, and my last blood test showed "normal" inflammation, although the ESD was still a little on the high side.

You're right, the "name" given to my disease is not important in itself. It's the underlying treatment strategy is what really matters. Some autoimmune diseases apparently linger much longer than others so the tapering schedule might change if it turns out what I have is not PMR. The decision to use other biologics could also be affected.

Whatever I have, it definitely has some differences from a classic presentation of PMR:

1. Inflammation in structures at back of eye (causing double vision)
2. No stiffness or "gelling" in my shoulders or hips
3. Inflammation levels statistically far, far above those with PMR. By my calculations, using Gaussian statistics, I'm at something like a 1 in 250,000 level if it is PMR.

It sounds like you are using tocilizumab. I've heard it targets IL-6 and can really help, especially with tapering.

PS I've learned the hard way recently that "relying on what my doctor tells me" can be very dangerous to my well-being. Yes, they are technical experts, but the decisions and responsibilities are mine. They work for me.