PMR diagnosis from GP

[Timber123]

I am 52. Diagnosed with piriformis syndrome (sciatica). In the last 6-8 months started having pain in my buttocks, front and back of thighs. Severe stiffness in the night and when I first wake up. I also get quite sore and stiff in the evenings if I am watching tv. My upper arms and neck are very sore. Hard to get up from crouching and difficult to get in and out of the car. Getting harder to climb stairs. I can barely touch my knees, never mind my toes. If I lie on my back on the floor I cannot extend my arms above my head. But The more I move the better I feel so I continue to walk daily as I have for 10 + years. I actually manage quite well during the day as long as I don’t overdue it. All my bloodwork is normal except a bit higher than normal CRP.

I am in Canada and cannot get into a rheumatologist for at least 18 months because I look pretty good on paper and physically. Our healthcare system is awful that way. So frustrating. I’m on CBD oil but so far no difference. My family doctor thinks I have polymyalgia and wants to try me on prednisone 25mg for 3-5 days just to see if I respond. She doesn’t want to do this until we know for sure the CBD oil won’t work as she would rather me be on that if it will help so we will wait a few more weeks.

Another note is I had a steroid shot in my butt for piriformis syndrome a few months ago. The strangest thing was all my pain went away for awhile, not just the sciatica! Especially noticed the pain went away in my shoulders although now it’s back.

So my question is whether this sounds like the picture of someone with Polymyagia and also does starting at 25 mg for 3-5 days sound reasonable?

Thank you for your support💜

[PMRpro Ambassador]

Piriformis syndrome and the rest of what you describe is absolutely typical of PMR for many. And to have had a steroid shot for something and to discover other aches and pains disappear is also a typical event that leads to the diagnosis of PMR by accident,

I'd be inclined to ask to try 20mg first - 25mg is the top of the range for starting dose - and for a week if necessary, possibly even a few days more.

[Timber123 in reply to PMRpro]

Thank you. What if I ask for 15mg? Advil seems to help so I wonder if I can start at a lower dose of pred?

[PMRpro Ambassador in reply to Timber123]

If Advil (iboprofen) seems to help that would be quite unusual in PMR. But Advil isn't an innocent sweety either.

[Soraya_PMR]

That does sound like a pretty accurate picture of PMR.

20% of us don’t have raised inflammatory markers. I didn’t.

I’d agree with PMRpro, try 20mg. That’s where I started and got relief in hours.

[Timber123 in reply to Soraya_PMR]

Thank you. I know my CPR was higher than normal last time. Unfortunately don't have the numbers. Not sure if they did a sed rate as I didn't know to ask. I will ask for my results next time. I usually know better.

[alvertta]

I see Dr Lui in Milton Ontario. Did not take long to see her. Are you in Ontario?

[Timber123 in reply to alvertta]

No, I am in Alberta. My docs have been trying to get me in for at least a couple years. They finally accepted me but still a very long wait. Hence, why I am trying to get as much info as possible. My doc respects my research and works with me, thank goodness.

[alvertta in reply to Timber123]

That is too bad ...my care in Ontario has been excellent. Fast access to every Specialist. I am sorry you have had to wait so long. There is a great book by Kate GILBERT on PMR and GCA. I recommend. I bought it on amazon

[PMRpro Ambassador in reply to Timber123]

Where-ish?

[Timber123 in reply to PMRpro]

Calgary

[PMRpro Ambassador in reply to Timber123]

I have 2 PMR friends in Calgary. One has been away for the winter but is soon heading back. Maybe there will be a Calgary PMR support group forming ...

[pollymarierose]

I was diagnosed with pmr but had low markers so my rheumatologist was going to do a wait and see on me for 3 months. That meant no prednisone. When I developed gca symptoms, my rheumatologist ordered more blood work. He didn't even want to see me. I was frightened at this point so went to the ER. Immediately she put me on 60mg of prednisone. 7 hours my pmr symptoms were 90% gone and 36 hours later most of my gca symptoms were gone. What finally convinced me to go to the ER was my friends here on HU. They asked me what the harm was in trying prednisone. If it worked, there was my answer. I thought I was going to have to convince ER doctor that I really did have most if the symptoms. She instead said she didn't need to look at my labs to know I had PMR/GCA.

Best of luck to you!

[PMRpro Ambassador in reply to pollymarierose]

And your previous rheumy actually possibly pushed you towards GCA. Untreated PMR is 7x more likely to progress to GCA - so the wait and see approach is potentially negligent.

[pollymarierose in reply to PMRpro]

I couldn't agree more! Hopefully that rheumy and others like him will not learn the hard way that their arrogance is not the priority here!

[Timber123 in reply to PMRpro]

This is good to know!

[Timber123 in reply to pollymarierose]

I am so worried about the GCA symptoms. What are they other than eye blurriness? I am going on a 20th anniversary trip in mid May and just want to be organized for any of this. My doc said she is sending me along with prednisone but didn't talk to me at all about GCA. Not good timing with this trip but it is what it is.

[alvertta in reply to Timber123]

Tender head, locked jaw, headaches. Get the Kate Gilbert book. Good luck. Any flashing lights in Your eyes...straight to emerg. Tell them about GCA. I was lucky the first emerg doc I saw knew about GCA and I had locked jaw, flashing lights in my left eye, tender scalp. I had 1000 mg prednisone intravenously for the first three days. Good thing as I had ignored the symptoms for three days. Duh!! No sight lost. 👏🏼👏🏼👏🏼

[Timber123 in reply to alvertta]

Glad you are ok!

[alvertta in reply to Timber123]

Lucky dodge. The emerg doc knew GCA and called the stroke clinic neurologist in Owen sound for advice.

[alvertta in reply to Timber123]

I was just at a get well yoga class for 90 minutes, Thinking about you. I hardly see my neurologist. I see my family doc every month. I have blood tests every two weeks. I self regulate my prednisone following a taper method published in the Edinburgh medical journal rcpe.ac.uk/sites/default/fi....

So I guess what I am saying is that combined with your own research,this fabulous group on PMRGCA, your family doc and regular blood tests, you are on the road to success. All the best.

[Soraya_PMR in reply to Timber123]

Timber, this thread may help you re GCA symptoms

healthunlocked.com/pmrgcauk...

[Timber123 in reply to Soraya_PMR]

Thanks, just starting to read this!

[alvertta in reply to Timber123]

Scary read.

[alvertta in reply to pollymarierose]

You dodged a huge bullet. Thank goodness!

[pollymarierose]

Yes, I did! I am thankful I listened to my HU pmr/gca friends and finally went to emergency.