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Osteoporosis or PMR symptoms

Osteoporosis & Bone Health | Last Active: 6 days ago | Replies (19)

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@JustinMcClanahan

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?

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Replies to "Hello @susanew, I'd like to invite @isabelle7, @leleettetou, @moni54 and @tsc to this discussion as they..."

@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.

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.

Two rheumatologists have recommended Prolia.