Recently Diagnosed PMR Disease Progression

Some people with PMR and/or GCA are on prednisone for many years. If they are lucky, the disease burns itself out in one or two years, but that doesn't happen for everyone.

I have PMR and GCA, and I've been taking prednisone for a year, and Actemra for 10 months. If things go well for me, I'll be finished with prednisone in 2 more months. I expect to have to take Actemra for at least a few years.

It sounds like you are tapering much too fast. I was on 60 mg of prednisone for 6 weeks to get my GCA under control. I think most people with PMR stay at the initial dose for at least a month before starting to taper. I think you are still feeling the initial effects of the PMR, so it's hard to call it a flare if it was never fully controlled.

I feel very fortunate that I haven't had any pain at all from the PMR or GCA since I started treatment a year ago. I've had to take a lot of prednisone, but that gave me a good quality of life. Is there any chance you could get a prescription for Kevzara? That would control your inflammation if your doctor won't give you enough prednisone. It takes a couple of months for the Kevzara to take full effect however. Otherwise you might consider changing doctors so that you get the treatment you need to control your pain and inflammation.

Hello @kmmi, I would like to add my welcome to Connect along with @jeff97 and others. I agree with Jeff about the tapering too fast. We are all different and while no one wants to be on prednisone there is no one set schedule that will work for everyone. You might find this discussion started by @dadcue helpful
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Do you keep a daily journal/log of your level of pain when you first get up along with your dose of prednisone for the day?

@jeff97 would you care to tell of your symptoms of GCA ? I had noticed my temple swelling where my glasses are on the left side and having headaches, pain and tenderness. Yesterday I noticed both sides was swelled and having a headache on both sides. I can see the artery/vein bulged out above my glasses

I had a lot of symptoms of GCA. I had pain in my cheekbones that was the worst when I was in bed at night, because of the pressure against the pillow. I had night sweats, low grade fever for several hours each day, weight loss, tenderness around my ears and on my scalp, and a lot of fatigue in my jaw muscles when I was chewing. I eventually went to the emergency room when I lost the vision in one eye for a few seconds. While I was at the hospital I had several more episodes of temporary vision loss in that eye. They started treatment immediately for GCA, and my vision turned out ok.

I never had any headaches, and I didn't pay attention to my temporal arteries. They did do a biopsy, and it was positive for GCA. I just googled headaches and GCA, and it said 10 - 30 percent of patients with GCA don't have headaches. But I had most of the other symptoms.

Are you currently being treated for PMR? I had PMR for maybe 8 months or so before I started having symptoms of GCA. Have you had a rheumatologist check you for GCA? It can be very dangerous.

Get it checked as soon as possible. Say exactly what you just wrote and a medical professional should want to see you sooner rather than later. Today wouldn't be too soon. I just did a Google search of your symptoms exactly how you wrote it. Artificial intelligence said the following.

"Based on the symptoms you're describing, particularly the swelling and tenderness in your temples, the headache, and the visible bulging artery/vein, this sounds highly concerning for Giant Cell Arteritis (GCA), also known as Temporal Arteritis."

This post is to help validate what John VM posted. I too thought i would be able
To wean quickly off the prednisone and be off in 6 months. Into my 7th month and now hope to be prednisone free in one year. But as John said everyone is different. Rheumatologist said 6 months to 5 years is the norm. I do know that I kept daily log of pain while tapering and the interesting thing is even at 2 mg my shoulders and hips did
not have that excruciating pain that I originally started out with. So going to the lower dose did not seem to have ill effect on original issue. For that matter I would have said I was “cured” if the pain in hands and knees
wouldn’t have flared up.,The prednisone does seem to relieve the pain in those joints as well. Any way this condition is definitely not “take two aspirin” and all good.

I was diagnosed with PMR and possible GCA, July 2024. My GCA symptoms were headaches that were over my eyebrows and radiated across my temples, over and behind my ears. Sometimes, they'd just be over the temple. Sometimes, behind my ears. I never noticed bulging temporal arteries. I had a bilateral temporal artery biopsy, within 8 days of starting 60 mg. of prednisone. The biopsy report was 'negative', but it also stated that that didn't mean I didn't have GCA. The doctor may not have gotten a sample of the affected artery. Don't ignore your symptoms.

Hello @kmmi . I too was diagnosed very recently (around April 9th). And, my family doctor had me try a blast prednisone of 2 weeks, starting with 20 mg for three days and then 15 mg for three days and so on to 0. It worked at relieving my symptoms the first three days but with each successive drop I felt more and more pain. This is not a common approach and is not found in any literature that I have come across. It was a nice attempt and helped to further diagnose me but we were pretty sure I had/have PMR based on the clinical presentation, ESR and CRP blood numbers, and then the quick response to a 20 mg dose of prednisone. I started a "standard" dosage of 15 mg and am following the taper protocol outlined in an international study from 2015. It is a basic protocol but clearly it is just a guide as everyone has a different experience. I stayed on 15 mg for a month and tapered to 12.5 after that. I have been on 12.5 mg for the last three weeks and then just dropped to 10. My first drop to 12.5 mg came with about a level one pain and stiffness in the shoulders and neck. People on Mayo Clinic Connect said that that was not too uncommon and should diminish in a week or so. It did and I am not 100% after three weeks on the 12.5 but at an almost undetectable pain level. I did try some tylenol and it helped at first taper. However, what you describe sounds more like the enigmatic "flare" that we hear about. I was told by this chat room that if the pain continued and got worse after each day or week then I was tapering too fast and should go back to the original dose. In other words, I would be in a flare if that were occurring. Fortunately I have not had that happen with my first taper to 12.5 mg from 15 mg. I am hoping for the same with the drop from 12.5 mg to 10 that I just started this morning. Yes, prednisone is frightening but also a miracle. My doctor too and virtually every friend says "you gotta get off that stuff ASAP". Of course I and we all know that but there is not much else we can do. Kevzara (one of the biologicals) is possible but as far as I know, only after a fail or two on tapering. It sounds like some Drs are able to get insurance to budge and allow it earlier from what I have gleaned from this chat room. I might try that with my insurance but that can be a mountain to climb. My hope is to get to single digits with the prednisone and then look into it if I have trouble going down. I am more frightened off the prednisone creating a new problems for me than I am the pain of PMR some days but a short taste off that pain and debilitation reminds me to keep on the prednisone for now. Good luck.

Thank you!
Your experience is helpful in coming to grips with this.
I am really struggling to understand it all.

Yes I am keeping a journal of the dose and my pain and stiffness levels. I go back to see the doctor at the end of this month. I plan to go over it with him. I was doing so much better at 20 mg OK at 17.5 mg but at 15 mg. I'm in pain all most all day.