Osteoporosis or PMR symptoms

Hello @susanew, I'd like to invite @isabelle7, @leleettetou, @moni54 and @tsc to this discussion as they have mentioned PMR and osteoporosis diagnoses and may be able to share their experiences with seeking the best treatment for them.

@susanew, has your provider recommended a particular treatment yet? It is understandable to be concerned about side effects, has there been any dialogue between providers to ensure the medication won't counteract any particular treatment for either condition?

The rheumatologist has suggested Evenity due to bad bone density scores and a small fracture on Spine (L-1). He know my meds and had prescribed Medrol (Methylprednisolone) for PMI starting at 8 and tapered to 4 mgs and continuing to taper.. I am now down to 1-3/4 mg. But I am back to feeling achy and joint stiffness but not as bad as before. I will be starting the Evenity soon and am worried about possible problems with steroid.

@JustinMcClanahan
Thanks for inviting me to this page. I will check it out.

My husband developed PMR May 2023 then GCA (giant cell arteritis) Feb 2024. He was on 30 mg for PMR, tapered to 12.5 by Feb 2024 when he developed GCA. He then had three 1200 mg infusions of prednisone followed by 80 mg per day for a month. He’s tapered to 30 mg now with weekly Actemra injections. It’s been a ride! No wonder he’s developed osteoporosis.

I read that osteoporosis caused by steroids can improve once off the meds. But one needs to have treatment with one of the osteoporosis drugs (which is the tough part - which is best?)

My husband’s lumbar T-score was -3.4.

We are very new to this. He was diagnosed a couple weeks ago after a bone scan. I wanted the bone scan after reading results of a CT scan that showed a new compression fracture (T11) in Feb 2024 that wasn’t there in May 2023. I’ve had to ask for everything. It’s disheartening. I would think the doctors would have recommended it.

We’ve changed rheumatologists once already. The first one didn’t believe me when I suspected he had GCA which is very serious and dangerous. I had to fight to get a biopsy that showed he had it. Once diagnosed his doctor said he had the worst case she’d ever seen. Untreated he could have lost his sight, had a stroke or aneurysm or lost his life. Nothing to mess around with.

Now we’re dealing with osteoporosis. We now have the chief of rheumatology as his doctor. She has prescribed Fosamax. I asked her about switching to Evenity after reading that Fosamax wasn’t the right med initially. She has never heard of Evenity which leads me to believe she’s not well-informed on osteoporosis. So we’ll ask our GP for a referral to an endo or we’ll see if he’s open to giving us a different med.

I appreciate everyone who contributes here.

@JustinMcClanahan
Also. His rheumatologist said she prescribes Fosamax for five years and in some cases another five for a total of 10. I’ve read that’s too long. Also that Fosamax isn’t the best first med with prednisone induced osteoporosis. That something like Forteo or Evenity are better, then followed with Fosamax.

Hi All,

I was diagnosed with Giant Cell Arteritis after a year and a half of PMR/GCA symptoms. I had a dexa scan shorly after starting prednisone at 40 mg a day and my scores were -3.1. The rheumatologist prescribed Alendronate. I took it for two years. My spine improved out of osteoporosis, but my hips were worse. My PCP suggested I start exercising on a rebounder (mini trampoline), which I do about 5 days a week. I also do Dr. Loren Fishman's Yoga, 12 Poses vs Osteoporosis, six days a week, which is on YouTube, plus walks. I try to do targeted strength training exercises for my hips as well.

I was hoping to get off the Alendronate after three years, but woe is me! I've had a relapse of GCA - so I'm back on Prednisone, 40 mg. I was off it for a year and a half. I guess I'll be taking Alendronate longer, probably for a total of 5 years before the drug holiday is required.
I haven't had any fractures. I did Judo for a number of years so I know how to fall. I always trained with weights, but I didn't pay much attention to calcium intake.

Now I try to get 1200 - 1500 mg from food, mainly dairy. I make and fortify yogurt with nonfat milk solids, make a milk drink everyday, limit coffee to a cup and a half a day, eat wild canned salmon with the bones regularly. If I fall short, I take Calcium Citrate. I also take a Full Spectrum Vitamin K2 pill, Vitamin D in a multi vitamin, and get Magnesium.

When I first got the diagnosis I was freaked out, as my mother and aunts all had significant osteoporosis, but now I try to take it in stride. The alternative to Prednisone is blindness or a stroke from GCA so I don't have much choice.

Do check with your doctor about appropriate exercise, based on your condition and abilities. Dr. Fishman has variations of his selected yoga poses for those with osteoporosis and osteopenia. It's also a good idea to reasearch the postures and movements that can cause fractures and to avoid them.

I have osteoporosis and upon xray a small L-1 fracture was found. Also I had been suffering from joint stiffness of hips, thighs, legs, groin. Had full bloodwork done and no markers for inflammation . Even though, I was diagnosed as having Polymyalgia rheumatica.. My doctor prescribed Methyprednisolone (Medrol) starting at 8 mgs. I have now somewhat tapered down to 1-1/2 mg. My question is could I have the same symptoms with the small L-1 fracture and not had PMR? Still tapering the steroids.

Hi susannew32,
yes, PMR is often part of a differential diagnosis with other causes. If the steroid methypredisolone if rapidly effective, it will be another clue that you have PMR.
In general people with PMR have high cortisol levels. So that's a clue in the column that indicates no PMR.
If PMR is untreated it can develop in to Giant Cell Arterietis, so I'm happy with your prescription for Medrol, especially impressive if the script comes from a general practitioner.
If you don't have a rheumatilogist, you might consider consulting one.
The small fracture at L-1 needs to be addressed for cause. Those small fractures can remain undetected.
A local priest had just such a fracture undetected by MRI and he wasn't scripted for a CT. He took so much tylenal that he ended his life in liver failure.
You are on a high short course of steroid which is a good diagnostic application. If you have osteoporosis (the fracture) you won't want to be on steroid.
That kind of fracture can cause the pain your are feeling.

Actually, I was diagnosed by a rheumatologist and the steroid was very effective to relieve the stiffness. I am being treated with Evenity for the osteoporosis. So I have both osteoporosis and PMR, a two edged sword since steroids contribute to osteoporosis although I had osteoporosis way before I ever took steroids.

Susan, it is good to keep an open mind about diagnoses, without engendering hope. How are you on Evenity. It can be inflammatory for joint articulation, but not in the blood vessels. Sorry for your double diagnosis. Glad you are getting good care.

I've been told to take tymlos or evenity at this point due to my numbers. I'm choosing the obvious choice-1 shot month for 1 year as opposed to daily shot for 2 years. I have osteoarthritis and wasn't aware it would be aggravated by eventity. I also have joint pain in hips and groin. What am I missing on making the right choice for my health?