Connect
Diagnosed with PMR 16 days ago.
After weeks of struggle, I was diagnosed with PMR on 17 June 2025, 16 days ago. The emergency doctor prescribed 20 mg of prednisone and he gave me two weeks worth. The first week it seemed to work well I started the day in a little bit of pain, but by mid morning 10-11 AM, I started to feel good After the first week however, it took longer and longer into the day before I would get any relief sometimes 3 to 4 in the afternoon. I had to call my primary care physician as a result, and after some discussion and hesitancy on his part, we upped the dose to 30 mg as of this past Saturday The first two days I felt like given that the dose had been raised, I was surprised to not get as much relief as I was expecting. But starting late Monday and then come Tuesday and Wednesday I was actually doing quite well. I would wake up a little sore and there was no decline from the time I took the medication to the point where it would then kick in so I was feeling rather optimistic. That was until last evening, 2 July, and into today. I started feeling much stiffer than I would’ve expected for the time of day and by the time I had gotten up in the morning, I was so stiff that I was back to a debilitated state. Not sure what to make of this. I would’ve thought that the 30 mg would’ve would’ve continued working like they had the two previous days but for some reason, I’ve just had a big setback. I do have a doctors appointment today but I do not know what’s gonna come of that appointment cause my doctor is very hesitant to play around with prednisone. Any suggestions would be helpful thank you.
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I have been able to go 7 weeks between Actemra infusions. My inflammation markers gradually increase and my symptoms start to return at about 6 weeks. Fortunately, it wasn't like a flare and a sudden relapse overnight.
I asked my rheumatologist if I will ever get off Actemra. There isn't any plan for me to stop Actemra anytime soon.
The reason was something that I didn't like to hear. My rheumatologist said my immune system, isn't likely to forget about what it has been attacking for so many years. The immune system is capable of forming a "memory" but for autoimmune conditions that is detrimental. Maybe if remission had been achieved sooner and was sustained maybe my "immune system memory" would not be so ingrained,
https://pmc.ncbi.nlm.nih.gov/articles/PMC11860616/#:~:text=Memory%20immune%20cells%20are%20central,edged%20nature%20of%20these%20cells.
---------------------
Another concern is that my immune system might form antibodies against Actemra and render it ineffective. In that case Actemra might need to be stopped because Actemra might stop working. The development of tocilizumab-specific anti-drug antibodies is rare, but it has been documented in various studies.
https://www.verywellhealth.com/antibodies-to-biologics-4846279#:~:text=Because%20biologics%20are%20created%20using,to%20a%20different%20drug%20altogether.
-
Like -
Helpful -
Hug
4 ReactionsNature is a bell curve. One person’s PMR can and likely will be different or more severe than others. That is why the doctor needs to treat the patient where they are at. The 15 mg starting protocol is fine and may well work for a majority but for some the dose will need to be greater to get it under control. I’m a month in and am on 30mg and I’m sure it’s still lower than it should be (some mornings like yesterday I was quite compromised to the point that putting on my socks my challenge of the day🤣🥵.).
You are lucky to get a diagnosis so quickly! I suffered for 4 months until the second doctor recommended a rheumatologist. He started me at 10 mg and it took several weeks to get to 100% again. I asked about a higher dosage and he said to be patient. I’m glad I was because I shot past 100% and felt like superwoman until my taper reached 1.5 mg. I’ve been prednisone free for 6 months now and feel my age (70). But it’s way better than PMR and ibuprofin works for me again. Good luck!
-
Like -
Helpful -
Hug
3 Reactions"I’ve been prednisone free for 6 months now and feel my age (70)."
-----------------
I have been off Prednisone for almost 5 years but I'm being treated with Actemra for PMR instead of Prednisone.
I'm 70 too. I only wanted to feel my age and I will accept those aches and pains.
Prednisone made me feel like a kid again ...young. free spirited and a bit impulsive.
PMR made me feel like I had suddenly aged and rigor mortis was setting in.
I very happy that I currently feel my age. I no longer experience all the ups and downs from taking Prednisone. Having to decide how much Prednisone I should take was a pain too.
-
Like -
Helpful -
Hug
1 ReactionI wonder how much someone taking Actemra or Kevzara actually feels their age. Those drugs block IL-6, which is one of the primary inflammatory substances in the body. I found this quote in Google:
"As people age, there is a tendency towards chronic, low-grade systemic inflammation, known as "inflammaging". This includes elevated levels of IL-6, which is linked to a decline in physical function and increased frailty in older adults. "
Actemra and Kevzara are much more subtle in their effects than prednisone, but they are still powerful drugs.
Nobody really knows how IL-6 "inhibitors" work. There was one theory that fascinated me. The production of IL-6 isn't actually stopped according to the theory. The overproduction of IL-6 is "reset" to normal levels.
Google the "bathtub theory of IL-6 blockade."
The following diagram illustrates the mechanism:
The red "Y' shaped thing is a molecule of tocilizumab that binds with IL-6 receptors. Don't overlook the small "drain" at the bottom which says IL-6 catabolism which is how IL-6 is normally eliminated from the body.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory_fig2_221967570
--------------------
In the context of rheumatoid arthritis (RA) artificial intelligence says the following but it is still a theory.
"In RA, the "faucet" (immune cells) is constantly open, producing excessive IL-6, and the "drain" (clearance mechanisms) can't keep up.
This leads to an overflow of IL-6 into the "drain" (IL-6 receptors), driving inflammation and joint damage.
Tocilizumab, an IL-6R blocking antibody, "blocks the drain", preventing IL-6 from binding to its receptors and initiating inflammatory signaling.
However, tocilizumab does not inhibit IL-6 production itself. Therefore, as the receptors are blocked, the unbound IL-6 accumulates in the serum, leading to a temporary increase in circulating IL-6 levels.
Over time, tocilizumab helps normalize the IL-6 levels by reducing the underlying immune activation and inflammation, effectively "closing the faucet" and allowing serum IL-6 levels to decrease."
I hope you find a new doctor- this one is really closed minded.
I can identify with your comment about putting your socks on. When I first got PMR, I couldn’t come close to being able to reach my foot to put my socks on. Prednisone was a miracle for me. Within 24 hours I felt normal again. My doctor started me on a high dose then worked down over time. This was the way my rheumatologist at Cleveland Clinic treated me and for me, it was a life saver. My advice would be get to a rheumatologist quickly. Hopefully your PCP has sent you to one by now.
Your doctor sounds confusing. My experience is that on the proper dosage of prednisone, I feel completely normal. I know prednisone has side effects but thank God for prednisone.