Classic PMR symptoms but...

I had symptoms for at least a couple of months before they became severe enough to get medical attention. I felt stiff, like I was aging quicker than normal. But I was busy, so I just ignored them and went on with life. After being diagnosed, my doctor recommended I try using naproxen and see if I could avoid taking prednisone. It cleared up my symptoms quickly. That might have been all the medication I required, but then I developed Giant Cell Arteritis, and had to go on prednisone. I was diagnosed last fall, and am now tapering off prednisone. As far as I can tell, the symptoms I now have are related to the prednisone rather than the PMR.

My PMR symptoms started as stiffness in both hips. No real pain, but I just could not walk fluidly. I could not get a normal stride. I was seeing an orthopedic nurse practitioner for a torn rotator cuff. She gave me a methylprednisolone pack to cool the shoulder off. It worked wonders for my hips. No more stiffness. After I finished the six day regimen I developed the most excruciating pain in both hips. Completely crippled. PMR was diagnosed. Started on 20mg prednisone. Relief within hours. On the tapering journey now. Will start 7mg tomorrow. So far so good. The most important thing I have learned on this site is to be patient and go slow. Thanks to all who have reiterated that.

I had a mild case to begin with and only hurt in my thighs and upper arms while in bed. (This happened right after my second COVID mRNA vaccination.) As soon as I got out of bed, I was fine! It went undiagnosed for 4 months because my blood labs were normal for PMR. When I finally saw a rheumatologist, he knew what it was right away and prescribed 10 mg. prednisone. My pain went away immediately and I managed to taper off of it within a year--about .5 to 1 mg. per month. Occasionally I have thought it was coming back because my upper arms would occassionally hurt again. It's been 3 years now and I haven't felt upper arm pain in about a year. BTW, I have always eaten an organic, whole foods diet with very little animal protein. There is a whole thread on diet if you search for it.
Good luck to you!

My PMR I think came on slowly. My shoulders then knees and then noticed swelling all over. Weight increased 5-6 lbs. All the joints in my hands swollen and so painful I couldn't make a fist. Contacted PCP, Labs were off the chart! Prednisone started 12.5 and got relief pretty quickly. Now waiting to get into a Rheumatolygist.

I have pretty much had the same issues as has been mentioned in the comments so far! This past summer, I began having stiffness and pain in my hips and waist. I just thought it was age related and being 65 and very active, normal aging stuff. I would take ibuprofen and that helped. Things progressively got worse and within a month, the pain began to migrate to my shoulders, neck upper arms. I began to realize this was not normal. I dreaded getting out bed, out of a car, a chair, bending over to pick something up, stuff like that. Especially bad in the morning, but would improve slightly during the day. I ended up seeing my doctor about 3 months after initial symptoms. This was in late October! I was in excruciating pain at the time! He diagnosed me with PMR and placed me on 10mg of prednisone. Within a couple of days, I was pretty much pain free and feeling amazing once again. I even had lots of my flexibility back. Off and on sense, I have had my prednisone decreased and increased based on symptoms. About a month later, I began having headaches that would not go away and jaw pain. Tylenol arthritis at 650mg helped, but only for a few hours, at least I could get some sleep! I then began having double vision occasionally. My rheumatologist, placed me on 60mg prednisone, up from 40mg. There is a good chance I have GCA, jaw hurts while chewing and stuff! I see my rheumatologist again tomorrow morning to go over options. My rheumatologist advised 3-4 weeks ago to get a temporal cell biopsy done. I went to a vascular surgeon last week in Dallas and he advised against it since I have been on prednisone for so long. We will see what happens tomorrow. This high dose of prednisone that I take in the morning really begins to make me feel terrible about 30 minutes later and for the next 7 hours or so. So much fatigue, light headed and brain fog. Good luck with your condition and hopefully it won't progress like mine has. Knowing that over time things should improve helps! This forum has helped me a lot also!

@dougrout

I think the vascular surgeon is right. After starting Prednisone it is hard to interpret anything that could lead to a definitive diagnosis. It is even difficult to know if you have an infection or some other medical condition.

The problem with Prednisone is that it isn't a "targeted treatment" and it is prone to have systemic side effects. Prednisone is a powerful immunosuppressant and anti-inflammatory medication that significantly complicates medical diagnostics by masking symptoms and altering lab results.

Your description of your symptoms sounds consistent with GCA and sounds exactly like what people experience with Prednisone. Being on 60 mg is a lot of Prednisone. I'm not a fan of Prednisone anymore because it only controls inflammation for 24 hours or less. That means you have to take it every day or else the inflammation returns every day. Some people say the pain and inflammatory substances return in the middle of the night. That only means the inflammation isn't controlled during the night.

In the short term -- Prednisone is great. The longer you take it ... the worse the side effects get. I would encourage you to have a discussion with your rheumatologist about trying a biologic or even Rinvoq. There are some FDA approved alternatives to Prednisone these days. Nobody should be encouraging other people to continue taking Prednisone on a long term basis meaning years-- let alone for the rest of their life.

I think John Hopkins Vasculitis Center is a reliable source of information.
https://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/
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This Mayo Clinic forum is fantastic for learning about the experiences that other people have who are on Prednisone. Also, many people here are being treated with alternatives to Prednisone.

Unfortunately yes.
Reading the replies so far, I thought I had written them.
I felt it come on slowly for 6 months. I started buying joint supplements, a lot of them, which didn’t stop it. I used my dad ‘s old cane to get into my PCP’s office. A Methyl prednisone pack made me feel like Superman in 2 days. But when it was over (6 days) I was back in his office barely able to use the cane. He put me on 40mg of Prednisone. That was 3-1/2 months ago.
Good luck. I hope you have a “false alarm.”

@dadcue Thank you so much for your input! I visited my rheumatologist yesterday! I will be tapering off prednisone in 4 days, from 60mg/day and 10mg less every 2 weeks until I get down to 5mg or so. I really hope I don't have setbacks during the tapering period. This prednisone is terrible! I was out shopping yesterday and just felt really drugged up!