New to PMR diagnosis

I had never heard of PMR, or any of the other related diseases. And always jumped out of bed early, after sleeping like a log all night. Never had any type of arthritic pain or ache, so was completely taken aback when I had trouble with my legs getting up one morning.
Next thing I knew, this pain had traveled into my shoulders and arms, and got so unbearable I went to see my primary care doctor. He took a blood test (confusing results) which showed inflammation. He put me on Prednisone 20 for one week, and I started to feel much better, but then reduced it to 10 mg the next week, which left me in horrendous pain in the morning. It's as if I cannot move or pick up my arms, even to make a cup of coffee. And getting dressed is unbelievably painful.
My doctor upped the dosage back to 20 mg, and some days I feel like my old self again with all my normal energy, but another day (like today) I am in pain and quite irritable and depressed.
I have an appointment with my doctor next week, to seek a good rheumatologist. I need to get over this dreadful energy-draining illness.
My doctor did ask me if I had some type of virus or cough before all this started, but I didn't - What I did have was a slight itchy rash at the waistline which went away after applying calamine lotion for a few days. He also asked me if I had been bitten by a bug or any other type of odd occurrence, I had not.
Does the weather change have anything to do with PMR? Such as extremely cold days, or the shift from summer to winter?
This PMR came out of the blue and has completely sidelined me, find myself still stunned at the fatigue and pain.

Hello,
I was diagnosed with PMR just about two weeks ago. I have been on a low-dose of prednisone, 10 mg daily for about a week. The prednisone does seem to help with the pain, particularly as the day wears on. My question is has any one out there ever started on a biologic to begin with? I am very frightened and fearful about the side effects of prednisone. Any and all information and insights would be helpful. I feel very scared about this diagnosis. Thank you in advance for your help.

You will find many helpful suggestions scrolling through
the PMR group comments. It sounds like your physician
is aware of your concerns on handling prednisone.
Not all of us experience long term need for prednisone.
You well might be done in a matter of months. The
side effects are manageable and mostly preventable at
your early diagnosis. Know all your lab results and keep
a copy of all your records. If you are concerned about
blood pressure you can easily monitor it with a home
unit.I always took my meds with a meal and use an antacid at night. Mediterranean diet helps with inflammation and weight control. Blood sugar can be checked every few weeks at home. A bone density scan and vitamin D with calcium supplement is indicated as well. If you need a higher dose for symptom control
you can feel more confident and stay active. Walk
every day. If you are proactive and stay positive you
are most likely to do well. Share all your concerns at
regular visits with doctor.

I agree with @seniormed that the prednisone side effects don't happen to everyone and are manageable. I have GCA and PMR, and I started on prednisone almost 8 months ago beginning at 60 mg a day. I stayed at that level for 6 weeks, and now I have tapered down to 8 mg. I've also been injecting Actemra weekly for 7 months. I've only gained 3 pounds in 8 months, and I've been able to continue exercising. I had some muscle problems as I tapered the prednisone, but those seemed to have resolved once I got down to 10 mg per day, I just had a bone scan, and my bone density is ok. I take calcium and vitamins D3 and K2 daily, I'm going to have to start taking a statin to control high cholesterol triggered by the pred and Actemra, so that is one side effect I have experienced.

The quality of my life is much much better now than it was before I started the prednisone and Actemra.

Methotrexate injections weekly work for me, along with folic acid daily. Stay away from Actemra, nasty side effects.

I disagree with your statement about Actemra. The only side effect I've had is possibly high cholesterol. I've seen many more comments about bad side effects from Methotrexate than from Actemra.

Pick your poison. Prednisone and/or a biologic. I've been on Prednisone since July 2024. Started with 60 mg day due to possible GCA. Prednisone has turned me into a diabetic. I never had previous issues with blood sugar. I have always been active, ate the right foods (mostly), and have normal weight. At one point, my BS was 275. I've lost muscle mass. I will get my bone density checked soon. I will be getting my second Actemra infusion this week. I decided for myself, that reducing eliminating Prednisone was more important than the potential side effects of Actemra. It's an individual decision.

Thank you for your insight! I plan to talk with my rheum tomorrow regarding other possible options than prednisone.

According to Johns Hopkins Rheumatology website, "There is no “safe” dose of prednisone. Prednisone over time increases the risk of cardiovascular disease, osteoporosis and infection. It can worsen underlying diabetes and HTN. The effects are dose related– higher the dose, the worse the side effects. Prednisone use should be minimized. A dose of 5 mg daily use to be considered acceptable, but current thoughts are to try to eliminate completely." https://www.hopkinsarthritis.org/ask-the-expert/prednisone-how-much-is-too-much.

My personal experience supports this statement. After 3 months of prednisone therapy (decreasing from 17 mg to 6 mg), the bone density in my spine has been reduced by 10%, my current glucose level (which was previously normal) puts me in the "pre-diabetic" camp, my bad cholesterol level (which was previously normal) has increased by 50%, I have a "moon face" and fat has accumulated on the back of my neck. I haven't gained weight.

I started on Kevzara in early January and have tapered from 13 mg to 6 mg prednisone. My insurance company approved Kevzara ( that otherwise costs about $4,500 per month) after I had a major PMR relapse during an attempted prednisone taper.

My understanding is that there are studies of other drugs that may make it possible to avoid using steroids to treat PMR. A recently completed phase 2 study in France (found on PUBMED, the NIHs electronic database) involves a new drug that was tested on prednisone naive patients. The results were very promising. I hope that Kevzara's manufacturer does a similar Phase 3
study. Currently, prescribing Kevzara before prednisone fails is an "off label" use - and even decent health insurance companies will avoid paying for expensive biologic drugs by stating that the use is "off label." (Btw. I was shocked to read on United Healthcare's website that its drug plan does not cover drugs that the patient self-injects - which cleverly allows the plan to exclude payment for Kevzara and other biologic drugs).

Thank you for sharing this info...
Do you wish that you had started on Kevzara?
Also, one of the members of this group seemed to imply that if Kevzara was injected at a hospital rather than self injected, that it would be covered by insurance.