Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

@sharon44r
Definitely with food, with breakfast. Additionally drink kefir when taking the prednisone. Pills go down very easily with kefir.
Gastroenterologist felt that I was fine taking pantoprazole before lunch and famotidine at bedtime. Seems to help a lot.

@caroljeand once you turn off your acid pumps in your stomach it is Important to get your vitamin D checked. I have been taking pantoprazole for 25 years and am now up to taking 4,000 units a day of vitamin D just to stay in the normal range. Prednisone destroys your bones, vitamin D, Magnesium and Calcium build bones please talk to your doctor.

@thewitchdoctor
Thank you… I just tapered off prednisone yesterday and hoping that was the culprit for my stomach acid. We’ll see.
In addition I have been taking 5000 units of vitamin D for some time not realizing it was a mega dose and could be harmful. I have decreased the use to every other day.
I plan to wean off pantoprazole at some point and just stay on famotidine at night for my nighttime stomach growling issues.
I do get my vitamin D monitored and my doctor said it was at a high normal range. That makes me think I was on too high a dose so I feel good about lowering it.
I’ll be curious to see what my next labs indicate. I do not want to take unnecessary meds so hopefully I can get off some of these.

@caroljeand

My rheumatologist also wants to keep my vitamin D level in the higher range of normal. It seems like all rheumatologists are obsessed with vitamin D.

When my endocrinologist and I discussed my hormones ... I learned that vitamin D was also a hormone. Prednisone likes to cause hormone imbalances according to my endocrinologist. The problem is that it is very hard to regulate hormone levels.

Artificial intelligence supports this notion:

"Vitamin D acts as a crucial steroid hormone produced by the kidneys, impacting immune function and calcium regulation, rather than just a vitamin. Prednisone, a synthetic corticosteroid, frequently disrupts the body's hormone balance, often requiring careful management by an endocrinologist to mitigate side effects."
https://www.cuimc.columbia.edu/news/whats-deal-vitamin-d
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I was trying to regulate my Prednisone dose to control my pain. I had no idea how many other hormones were being dysregulated because of Prednisone.

Artificial intelligence seems to agree.
"You are not alone in this experience; it is a very common and often surprising aspect of long-term or high-dose steroid use. Because Prednisone is a synthetic, potent version of the stress hormone cortisol, it acts as a "master switch" that overrides the body's natural endocrine system."

@caroljeand

My rheumatologist also wants to keep my vitamin D level in the higher range of normal. It seems like all rheumatologists are obsessed with vitamin D.

When my endocrinologist and I discussed my hormones ... I learned that vitamin D was also a hormone. Prednisone likes to cause hormone imbalances according to my endocrinologist. The problem is that it is very hard to regulate hormone levels.

Artificial intelligence supports this notion:

"Vitamin D acts as a crucial steroid hormone produced by the kidneys, impacting immune function and calcium regulation, rather than just a vitamin. Prednisone, a synthetic corticosteroid, frequently disrupts the body's hormone balance, often requiring careful management by an endocrinologist to mitigate side effects."
https://www.cuimc.columbia.edu/news/whats-deal-vitamin-d
---------------------
I was trying to regulate my Prednisone dose to control my pain. I had no idea how many other hormones were being dysregulated because of Prednisone.

Artificial intelligence seems to agree.
"You are not alone in this experience; it is a very common and often surprising aspect of long-term or high-dose steroid use. Because Prednisone is a synthetic, potent version of the stress hormone cortisol, it acts as a "master switch" that overrides the body's natural endocrine system."

@caroljeand once you turn off your acid pumps in your stomach it is Important to get your vitamin D checked. I have been taking pantoprazole for 25 years and am now up to taking 4,000 units a day of vitamin D just to stay in the normal range. Prednisone destroys your bones, vitamin D, Magnesium and Calcium build bones please talk to your doctor.

@dadcue
Fortunately I took my last 1 mg of prednisone yesterday.
And fortunately only on it for just less than 6 months.
In that short time it upset my blood sugar, blood pressure, stomach acid, and unknown yet in my osteoporosis level.
Can’t wait to see how my labs turn around after being off prednisone.

@thewitchdoctor
Thanks for posting that. I've been feeling bad for a while, and I was thinking it could be low vitamin D. I hadn't made the connection with the PPI. Google says PPIs can also interfere with B12, calcium, etc. I suspect I also have a problem with B12.

@jeff97

Neurologists are obsessed with Vitamin B12 levels. Neurologists monitor Vitamin B12 closely because its deficiency causes significant, sometimes irreversible, damage to the myelin sheath protecting nerves. Maybe that explains my peripheral neuropathy and some of my neuropathic pain.

I took a PPI for the entire time I was on Prednisone as a prophylactic. I'm not sure it was ever necessary. However, I fell into the high risk group:

High Risk (PPI recommended)
Concomitant use of NSAIDs, anticoagulants, or aspirin
High-dose steroids (>30mg prednisone equivalent)
Longer duration of steroid therapy (>1-2 weeks)
Advanced age (>65 years)
----------------------
In retrospect ... maybe the PPI worked because I never had a stomach ulcer.
My PPI was another one of the many medications that have been discontinued since I tapered off Prednisone.

I got a chuckle when someone claimed that prednisone side effects are "easy to manage when you know how." The problem is ... no medical professionals seem to know the best way to manage all the side effects. I wondered how a non medical professional person learned how to manage all the side effects.

@dadcue I only dealt with neurologists when I was being diagnosed. Plus my B12 and D levels haven't been monitored. My rheumatologist strongly recommended a small daily aspirin for me because of the vision problems at the time of my diagnosis, and also because of the risk of stroke from the GCA. I have taken a PPI because of the combination of prednisone and the aspirin since the time I started treatment. I tried stopping the PPI after I finished the prednisone, but I still have issues from the aspirin. I'm going to try upping my doses of calcium, D3, K2, and B12. I'm tired of being tired.