I think I have PMR and I’m terrified

@martyn In simple terms, biologics are a drug made specifically for a specific disease, in this case Kevzara. I recall it was approved in 2017 maybe, by the FDA.
Best you read the website for more. Key point is HELPS GET OFF PREDNISONE. Yes alternative to steroids. I do the self injection in belly. It takes upto 3 months to kick in. With me I was able to taper off the prednisone while building up the Kevzara startup, so to ospeak.
Insurance for me was easy. I’m Medicare and United Health. My drug plan has an annual co pay of $2000.00. That’s what I pay out of pkt for the first month and all else are covered for the year. Kevzara also has some sort of financial assistance on the website.
Hope this helps.

@martyn

There is a PMR forum sponsored by a charity in the UK. You're more than welcome to remain here if you wish. The UK forum has some great people who share their personal experiences. There are a couple of people who give medical advice which doesn't happen on this forum so much.

The UK forum is PMRGCAuk. I liked most of the people on that forum. There was someone who went by the user name of Cycli who I really liked. He was an avid cyclist when he was diagnosed with PMR. I don't recall his real name but I think it was Geoff but I'm not sure of that. If you join the UK forum ask for him and tell him Mike "DadCue" from Iowa in the USA was wondering how he was doing. He might not remember me so just tell him I said Hi.

I miss the UK forum sometimes but the health care systems in the UK and USA are very different. I'm not a member of the UK forum anymore. I was told that my personal experience with a biologic to treat PMR wasn't pertinent in the UK by one of the experts on the UK forum.

It doesn't sound like you're prepared to live with the pain and I don't suggest it. You don't mention hip girdle pain, only shoulders. You can get by with PMR and no Rx meds like my sister did, but she suffered in pain for well over a year and took massive amounts of ibuprofen, which was probably worse for her than the prednisone she tried to avoid. My pain started out manageable last October and only in my shoulders, but got progressively worse while I went from doctor to doctor looking for the cause, especially when the hip girdle pain started. I was diagnosed with PMR in March and didn't hesitate to start prednisone. I would have taken anything to relieve the pain. I had to taper down my prednisone, not by choice, but because of a subsequent SMM diagnosis. I'm now at 3mg prednisone and 3mg LDN, and I just took my third shot of kevzara last week. My pain is moderate, but kevzara can take up to 3 months for full effect so I'm being patient. Everything comes with potential for side effects, including kevzara, but you're too young to be living in pain. Not everyone feels the side effects though. Prednisone will provide nearly instant relief while you go through the options.

@cwbf thanks so much for your response and positivity!! I will certainly be a regular visitor to this forum .

@dadcue thank you !! I will join that forum but also stay on here . I will try to seek out Cycli Geoff !! Thanks again for taking the time to reply

I was diagnosed with PMR years ago. My doctor treated it and it has been in remission for a long time. My advice is don’t get ahead of yourself reading everything. It can send us down a rabbit hole that may/may not apply to us as individuals. It sounds like your doctor hasn’t completed the testing yet and will be able to guide you through what’s next and what to expect for you specifically. Best wishes for the right treatment plan for you.

Thankyou for your good advice. I have to admit I've been binge scrolling literally everything I can read (probably as a sort of coping strategy) but I agree there can be an overwhelming amount of very well intentioned infomation. I guess like you say be guided by the rheumatologist and trust their expertise. Thanks again

@cwbf

Thanks for the suggestion. I would have consented to something minimally invasive. My original spine surgeon said surgery would be "extensive" and my entire lumbar spine would need to be fused. There was so much "bad bone" that should be removed that the surgeon was worried that there wouldn't be enough "good bone" left to hold all the hardware needed to fuse my spine. The surgeon was very worried that I was on prednisone and decided I wasn't a good candidate for major spine surgery.

I had so much radiating leg pain at the time that I would have settled for a leg amputation. I took a big dose of prednisone because I could not stand the pain any longer. The pain stopped after I took the large dose of prednisone. It was a very traumatic experience for me that happened about 10 years ago. I still remember my rheumatologist looking up from my MRI scan and saying she was happy the pain stopped but she wouldn't have recommended so much prednisone. She didn't elaborate on what she would have done.

The whole ordeal was revisited a few years later. I wasn't in as much pain but a surgeon said a less extensive surgery could be done to relieve some pain. She said some nerves were being "crushed" so paralysis was a possibility. I have some nerve damage but my gait was still "functional" according to that spine surgeon. That spine surgeon left surgery pending for whenever I'm ready.

I'm going with what another neurosurgeon told me. He was the surgeon who did my microvascular decompression (MVD) surgery for trigeminal neuralgia. He said "let pain be the deciding factor" for doing the lumbar fusion. I don't have too much back pain currently as long as I stay on a biologic called Actemra (tocilizumab). My back problem is one reason why my rheumatologist doesn't want to discontinue Actemra and says it is better than taking prednisone for the rest of my life.

The other problem was a complication I had after my knees were replaced . I had an aberrant healing process called heterotopic ossification (HO) after my knees were replaced. HO is called bone formation in soft tissues where bone isn't supposed to exist. This was called a healing process gone awry likely caused by too much inflammation.

That orthopedic surgeon told me never to have any surgery ever again.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6715128/

@martyn Yep, same here. Was petrified (dec 2025), always active, healthy diet. I was scared of Prednisone, refused for 2.5 months (Jan-March 2026 in USA no insurance) and finally accepted pred when I could not walk up the stairs. This from a Canadian doc who's sister has exactly the same thing, PMR 2 weeks after Corona booster. My pain was completely gone 1-2 hours after 1st pred dose of 30MG. During the 2.5 months of pain but no drugs I juiced, fasted, completely stopped drinking and ate mostly vegetables. I DID gain 10LB on pred but had lost 30, so that was OK. I am crying now about the hair loss. Once started on pred mid March, tapered somewhat quickly, 5MG each week. At 2.5MG now tapering from 7 days a week, each week 1 day less. Lots of pain but manageable and it it is less later in the day. This forum opened my eyes to all the very different experiences people have at the different levels of Prednisone and biologicals. And like @tweetypie13 mentioned keep a diary. We are all a bit delusional (well, I am;-) and I forgot the pain. It does seem from what everyone says living healthy is important. Good luck on your journey.

Martyn, welcome to the PMR club (if that indeed is what you have; you will get the answer soon after starting your prednisone, either within hours or a few days). This is a club nobody wants to be a part of! I was exactly in your boat 3.5 months ago (I'm 10 years older than you), lifelong athlete, cyclist, "perfect " health, petrified by this mysterious disorder I'd never heard of and even more scared of the steroid treatment side effects. You will likely go through several stages like: why me? how did this happen? feeling like an old man, incapacitated; denial, acceptance, learning to live with aches and pain, etc. There are Facebook groups touting a prednisone-free PMR journey but I imagine there are relatively few who could tolerate for 1-2+ years the debilitating, excruciating pain that characterizes PMR. Slowly you will get used to prednisone. If you are one of the fortunate souls it could be measured in months (I'm still hoping for this) of taking the drug or years. The good news is that I can still cycle especially in the afternoon/evening almost pain-free (100 km/60 miles, relatively flat) in one session or 50 km/30 miles with 1000 m elevation gain). But everyone is different and you will have to figure out what you can tolerate. I've noticed very little "additional " pain after these rides. What I miss most is being able to do is certain upper body weight training sessions. Keep us posted on your early prednisone results and best of luck moving forward!