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Polymyalgia Rheumatica (PMR) | Last Active: Jul 2 5:14pm | Replies (65)

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@pargeo47

Thanks for your thorough and thoughtful reply. I have a friend who had GCA, so I was aware of the PMR relationship. The rheumatologist has me on Caltrate Plus, 2 in the a.m. and 1 in the pm, He said Caltrate is the only one that doesn't cause kidney stones. Additionally, he prescribed once a week 35mg of Alendronate Sodium (generic for Fosamax) to address the osteoporosis risk of the long term prednisone. That med must be taken on an empty stomach with water, followed by at least 30 minutes of being erect and no other meds, liquids, or food. I live in a community of up to 150,000 "over 50's" so my assumption is that the doc is quite familiar with PMR. Further, he monitors my magnesium levels, sediment, and CRP. My wife and I, too, eat pretty healthy. My largest daily dosage on prednisone as 24 mg (6 4mg) only twice when I had the "packs" mentioned in my initial post. Other than that, I "maxed" at 17 mg and am down to 12 mg and still experiencing good symptomatic relief.

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Replies to "Thanks for your thorough and thoughtful reply. I have a friend who had GCA, so I..."

isabelle7 | @isabelle7 | Jun 16 8:16pm

@pargeo47
Thanks for your response. How great that your doctor is on top of this and has you taking Fosamax early on to avoid getting osteoporosis. I only wish someone had told us! Some doctors leave me scratching my head at times, especially the first rheumatologist we had. She didn't even believe me when I told her I thought he had GCA. He was so sick that I had to insist on the biopsy, hoping and praying I wasn't putting my husband through that for nothing. Turns out it was severe and so disappointing. She never once mentioned the bone issues with taking prednisone. I would have been all over it had I known. Ugh! Now it's too late for Fosamax as a starting drug and we're looking at Forteo. His new endocrinologist is on it now and seems very knowledgeable. Once we get some results back we'll know if he can take it. If yes, he'll be on it for a couple years followed by a couple years on Fosimax.

Thanks for the info on calcium - no one told us about the Caltrate Plus either. Nice to know it won't cause kidney stones. Since he's getting 1200 mg in his diet, do you think he should also be taking the Caltrate Plus? How many mg are you taking in the morning and the evening?

I'm going to be sure that he's being tested for magnesium levels. They are routinely testing sediment and CRP. That is fortunate you haven't needed higher doses of prednisone. He's been on such high doses and unless I had noticed the compression fracture that showed up since last May, we would still not be addressing osteoporosis with his lumbar t-score being -3.4. Which is really bad.

Thanks again for the info.

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isabelle7 | @isabelle7 | Jun 16 8:37pm

@pargeo47
One more thing. I went back and checked and they have not tested his magnesium levels. Can I ask why they're checking yours and if you think it's important his be checked? I can ask for it. One thing they're now good about is doing pretty much anything I ask. After what we've been through.

Also, these are the tests they've given him since he developed GCA in Feb 2024 - anything jump out at you?:
2/13/2024 –
comprehensive metabolic panel (no magnesium) – BUN a little high
Vit D level – normal
Phosphate – normal
Serum protein electrophoresis – Alpha 2 a little high (normal .50-.90 – his result .97)
Urinalysis – RBC/HPF said value 4-10 abnormal (no one said anything about this)
ANCA panel – normal

4/6/2024 – thyroid ultrasound – found 2 thyroid nodules, will get biopsy in August (2.0x1.8x2.5cm) (1.1x0.8x1.1 cm)

5/6/2024 – white blood cell differential – cholesterol is up some, per dr, good HDL is up also. Platelets a little low, not worrisome (per doctor) – repeat in 2 weeks
In reading labs, Myeloid Precursors Abs Auto high at 0.19 (normal 0.01-0.07)

6/11/2024 – white blood cell differential – note from doctor labs overall stable.

6/11/2024 – complete blood count – RDW, CV high 16.0 (normal 11-14.5%); RDW, SD 57.7 high (normal 36-50); Platelet count a little low at 134 (normal 140-375.

We’ve had ESR and CRP tests done every two weeks, then tapering down the prednisone as levels remain stable.

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