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What steroid dosage did you start on? Did you find the right dosage?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 5 5:38pm | Replies (154)Comment receiving replies
Thank you, but I'll need to be patient and wait a few days. It's disheartening that the prednisone has had such a slight response, particularly since I have osteoporosis and Prednisone attacks bone mass (I take Alondronate). I am in pain, but it's bearable and I do have a doctor treating me. This isn't a sudden onset situation, or one in which things have worsened.
We're considered to be rural. The local medical clinic (14 doctors total serving the area) has a recording saying that after-hour emergencies should go to the hospital, which is in the next town 15 miles away. Those who go to the Emergency Room tend to have a very long wait - I'm not sure yet what auto-immune means, but it feels like I shouldn't spend hours sitting with sick people. As things stand, I have bloodwork scheduled locally for Tuesday, will see the treating doctor on Wednesday.
Replies to "Thank you, but I'll need to be patient and wait a few days. It's disheartening that..."
That makes sense, if you feel the pain is bearable. It’s such a tough situation to be in when you can’t get in touch with someone who can help immediately.
15 mg may not be high enough for PMR, so it’s great you have a plan to connect with your care team and take new labs. It’s sometimes considered on the lower end. My dad started at 20 mg, which had an immediate noticeable improvement, but he was clearly still symptomatic. Within a few weeks, he had a stroke that may or may not have been related to GCA (which often occurs with PMR and is a risk factor for stroke if not treated quickly or well enough). Around that time, he had a huge spike in his ESR (one measure of inflammation that often is a sign of PMR) and he had to go up even more. Despite the side effects to prednisone (and we are VERY leery of side effects), the risks of unchecked inflammation and the long term effects of changes to the nervous system from chronic pain due to the PMR were much worse =(
We’re not in a rural area, but it is still very hard to get in immediate touch with someone to advise on the medication. We’ve become accustomed to making adjustments to the prednisone in our own in response to a flare, once we got used to the patterns of waxing and waning especially with tapering. Depending on the situation, we just ended up deciding based on the severity of my dad’s pain (sometimes we could wait, sometimes not—we learned the hard way that as the patients we bear the brunt of the consequences no matter the reason a health care provider isn’t available or doesn’t believe us, so whatever decision we make, we’re the ones who end up living with it =\…i.e. the stroke) or wasn’t worth waiting 5-7 days if we were only going to adjust by a few milligrams. Of course I’d eventually send his rheumatologist a message to let her know; so far every time this has happened, by the time she gets to the message some 2-5 business days later she’s fine with it.
But you know your body best and eventually hopefully you and your care team will sort things out, I’m hoping for you.
If it helps at all to know, he also takes alendronate. He wasn’t diagnosed with osteoporosis, but it was prescribed as a precaution because PMR requires long-term prednisone. So far things have been good—no noticeable signs/symptoms of bone loss, fingers x’d.
Good luck to you!
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I relate to that, I am rural as well. The only clinic in town has five doctors and a very good PA. The closest hospital is almost a hour away on a 75mph highway. I try to avoid that.
Being immune compromised in part means you need to avoid getting any infection, cold, flu, viruses. i mask the rare times I go out, have groceries delivered since early 2020 and wash what comes into the house. It's just routine now but I've not been sick. So win-win. Take care.