PMR Dosages and Managing Symptoms

Hi Newbie, When I started with prednisone I did read that it could affect sleep. With that in mind, I took my whole dose 30mg (one week at this amt.) in the AM (7:30-8:00). I was careful to eat something first, usually a banana, and take meds with a glass of milk. So far no change in sleep patterns or gastro issues. I am now at 17.5 and (fingers crossed) doing fine, still taking the whole dose in the morning. I want to mention that I am also taking a boatload of supplements. Before PMR I was med free, only taking a daily Vit D3 and occuvite (eye health). Now, as I think I mentioned, I have added 1000 calcium, more vit D, vit K, occuvite, Pepcid (20mg) and of course prednisone. The Pepcid is a new addition because rheumatologist said long term prednisone use (more than one week) could cause stomach bleeding and the Pepcid is a preventative measure. So now I am feeling like the old person with the pill container full of stuff that I have to manage everyday. However, if this regimen helps to put PMR into remission, I will be a happy camper. Good luck. Liz Ward from VA

Yikes. I think I’d do the same as you and bump back up to 15 mg. We’ve had situations like that after we got more comfortable with adjusting the prednisone that we started making small changes ourselves (i.e. staying an extra week on a higher dose before titration or going up by 2.5 mg if it seemed like a flare).

Can you ask if there is a different rheumatologist covering for yours who can send the refill for you?

Curious, did your doctor recommend splitting the dose? My dad (he has PMR; I am a caregiver) took his initial 20 mg dose in the morning and be really couldn’t sleep because he’s so sensitive to medication. He really wouldn’t have been able to tolerate taking any amount later in the day. At one point, his doctor recommended trying it, thinking he’d “sleep through” before the side effect kicked in and woke him up, but it only made it worse >_< But everyone’s different, right?

This is a genersl doctor who, after the ER doctor was unable to diagnose me, did within ten minutes of hearing my symptoms then did bloodwork to verify that. I'll stay with him for now.
I live in a very small town, about 1,400 people. The closest Rheumy would be about an hour away by highway and I'm not keen to drive that. especially not knowing if they're any good.
I am comfortable with a bit of tweaking or extending, my concern is with the refills. My insurance won't allow more than one at a time though having different mgs would make it easier. Rather than going down 2.5mg from 15mg. I'd like to go down 1mg at a time and will talk to the replacement (he's out until July 11) about that.

In my situation, my doctor had me take 5mg 3x per day. When I saw him again and complained about the bad sleep (even though I take Ambien), he suggested I take the full 15mg in the morning. I woke with such pain the next day that I now split and take it every 12 hours. He said it didn"t matter as long as it was taken daily. I hope this helps. And you're right, everyone is different. Viva la differénce!

@emo hi there - actually it was here in this Connect group that I saw mention of the split dose and PCP agreed to that.
My cousin had PMR about 9 years ago - he told me he took his (entire) dose at night . As my closest point of reference for PMR-experience he started at 15mg , had trouble at the very end of tapering - crawling along by reducing by only 0.5 mg and is in remission -never had a relapse !

NOTE : In the thread of 'clinicals trials 2023' - there is a trial for TIME-RELEASE Prednisone -

Hi, You and I have a bit in common. I am 80 years old and was diagnosed with GCA last August. I had PMR diagnosed late 2015 and my blood meds showed remission about 2 years later. I forgot [almost] that I had had PMR.
Now with GCA, prednisone has given me a cocktail of side effects. My rheumatologist says no to prednisone being the cause but for me , the coincidence is just too much. I have sensory neuropathy which means my feet are partially numb , so I walk very carefully. I have also suddenly developed Atrial fibrillation . I have never had any suggestion of heart disease until now. My main source of pain is a lumbar stenosis. Yes, of course I have the chipmunk face . All of this has changed my life. Mostly I just want to stay at home. A fair bit of fatigue involved.
My current dose is 11mg down from 50 over several months. I see rheumatologist next Thursday. Eye specialist the following week and then cardiologist mid July.
I'm trying to keep positive and will Google possible dietary changes which may help. Thankyou for sharing your circumstances. Valerie.

I am on the metrology pack of predesone. For a bit over a month I was taking one half pill every other day. Many flare-up! I am now on one pill a day, 4 mg. No flare-up. I do get bouts of fatigue that slow me down. My doctor most likely will put me on reg predesone in July and it looks like that will be permanent. I am 2 and one half years with PMR. So it will be permanent.

From what I understand, one of the reasons why we need to be on enough prednisone to take care of the inflammation is the risk of acquiring GCA (Giant Cell Arteritis. Make sure to keep your doctor informed of flares so they can adjust your dosage accordingly.
Input or correction aporeciated.

Thank you! Fully agree.