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Day 4 of prednisone and happy! Stay at 15 or go up to 20?
Greetings! First post (yay!). Finally got a treatment plan exactly a year after first hearing of PMR (and lurking here). Delay caused by other health issues (see below). This week started on 15 mg prednisone with instructions to increase to 20 mg after 3/4 days if I didn't get relief.
I started feeling relief in about 3 hours, and after two days my cement shoulders were largely gone, my hips have loosened, and my fatigue has lessened. But it's confusing; like may of us, I have a slew of other muscle issues. Specifically:
Over the winter I had a flare up of a crushed nerve root issue; treatment was successful but it leaves my hip and leg muscles a mess, with slow (months-long) rehab. Also had a prolapsed biceps tendon last year that messed up my left shoulder (two problems that keep me from raising my arm, yay!). The amount of home PT I do is insane. And my sense is that the PMR made rehabbing these injuries extremely difficult, with limited results (though I am currently reaping the benefits).
So now, starting day four, I'm feeling all of the old injuries in a more pronounced way--as if, with most of the PMR pain removed, they've reared their heads to demand attention. I'm happy to provide that, of course, but it is just a bit hard to tell what the heck is what in my left shoulder, left hip, and left leg.
So it's hard to judge exactly how successful the 15 mg dose has been. I'm thinking at least around 60% better? Maybe 70%? It's great, whatever it is, but I can't quite decide if I should stick with 15 mg or go up to 20. I'm thinking, this is my chance, don't blow it. Any thoughts?
A bit more about my PMR. Pretty classic morning stiffness, shoulders lately unusable, fatigue. ESR topped out at 104; CRP at 32 mg/L in January; about half that now, for whatever reason--maybe doing Mediterranean diet and upping the antioxidents. I'm gonna be 73 next month. 🙂
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@p0rtia You are a role model for us all. I did similar and it’s working for me.
As for taper….my tune is…..slow is GOOD.
Taper NO MORE than 10% a time. Stay at that dose until you are pain free for at least 2 weeks.
Keep asking the questions!
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2 Reactions@slh317 I agree. I started such worrying about grandchildren which I know was stress. Impossible situation I won’t go into. Trying to clear my mind and have a good doctor having me on prednisone. Wishing you well .
It is so incredibly helpful to have all of you to reach out to!
I will be 66 next month. Recently, I was put on a 4 mg. Dose of prednisolone with 6 pills the first day 5 pills the second day etc. by the time I was up to day 6 the pain was back full force! This was from a Spine Specialist, who did not get it at ALL! Three days ago with the help of a wonderful Rhumatologist who diagnosed PMR after talking to me for a few minutes, he put me on 30 MG. (10X30) a day of prednisone, which he increased yesterday to 20 in the AM and 20 in the PM, since I still could not sleep from the pain! He plans to decrease as necessary.
Anyone else have no feeling in the tips of all ten fingers? I wonder if it is connected at all?
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1 ReactionI started Kevzara when I was using 35mg/day of Prednisone.
At 15, I tapered 2.5mg every two weeks to 10.
From 10, I went to 8.5, from two weeks, then 7.5.
From 7.5 to 6 for one week.
From 6 to 5 in one week.
From 5 to 4 for one week.
From 4 to 3 for one week.
From 3 to 2.5 for one week.
From 2.5 to 2 for one week.
Currently at 1.5 for one week (maybe ten days) then going down to 1.
My plan is to do 1 for two weeks, then 0.5 for two weeks, then 0.
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3 Reactions@remargulies
Inflammation in your shoulders could be causing tingling and numbing sensations in your fingers. I experienced that before PMR diagnosis and sometimes now while tapering down on prednisone. I'm using 3mg LDN at night to help me sleep.
@p0rtia The best way to look at tapers based on my experience is to look at the percentage of decrease. Going down I try to use a 10% rule, meaning I want the decrease to be no more than 10%. If you are at 15mg than 10% is 1.5mg so your 2.5mg is above my rule. My advice would be to go down 1 or 1.25mg every 3 weeks. They make 1mg tablets so you can ask for an Rx. Also I give it at least 3 weeks to really see how I am feeling before dropping again. You might want to keep a pain log so you are not basing it completely on your memory. Tapering is an art, not a science, so one size does not fit all. If it works for you then you are doing it correctly. Scary thought but true.
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5 Reactions@remargulies Very likely you have neuropathy in your fingers from the systemic inflammation in your system. I have it on the bottom of my feet. My neuropathy has gotten better slowly.
Your dose of prednisone is getting up there. I started on a high dose as well and moved to 20mg within two weeks. I hope you can come down quickly since prednisone at that level would cause me to not sleep at all. Anything higher than 20mg robs me of sleep and begins to play with my mind big time.
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1 Reaction@remargulies
Hi. I’m 69, male. Dx’d at 68,
Nov. ‘25. My PCP, who treats about 2-3 PMR patients/year, put me on a 6-day Steroid Pack, like your Spine Specialist did for you.
Days 2, 3, & 4, I thought I was cured (felt like Superman.)
I went back to him on day 8, using a cane again. This is important, he told me he was testing to see how I reacted to the 6-day Steroid Pack. Because I felt like Superman (no pain) on days 2, 3, & 4, then the pain returned fully (hips, neck, shoulders) on days 5 & 6 of the Pack (less Prednisone) and days 7 & 8 were back to severe, he said he felt certain that I have what’s known as PMR. He didn’t not get it, he didn’t want to diagnose me until he read my bloodwork lab results from last week (E-sec rate and CRP which were over the top) and see how the Prednisone affected me. He then explained the disease, handed me a Mayo Clinic printout explaining PMR, and the rest is history. That’s how I found this website. I wish he’d told me that Prednisone might kill me (side effects.)
I may be wrong about your Spine Specialist, but I’m impressed with how he treated you, unless he abandoned you. PMR responds to Prednisone fast, and there really isn’t any other test. Bloodwork can be normal and still one can have PMR. He started me on 20am and 20pm like you. He kept reassuring me that the fingertip numbness and tingling is a Prednisone side effect. If you can’t sleep at night, try 25am and 15pm. Prednisone can prevent you from sleeping. I was given a sleep prescription and tapered to 20am and 15pm almost immediately. I needed sleep.
I’m glad for you that you are now with a rheumatologist that you like.
The people on this site are all winners in my book. Lots of experience on here. People having PMR and GCA, willing to share their experiences, what works for them, who respond to questions and concerns. Wishing you the best as you get through this.
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2 Reactions@stonewheel
I was having trouble sleeping on 25mg and my PCP prescribed belsomra. It worked for a few nights but the prednisone won out. It wasn't until I dropped to 20mg that I started sleeping better and that lasted until I got down to 15mg. My rheumatologist put me on 3mg LDN to help with my taper and that helps me sleep better by reducing night pain.
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1 ReactionI’ve read about PMR and LDN helping. Mostly for sleep as you say. Do you take LDN only at night and strictly for sleep? I couldn’t sleep on 35mg Prednisone split twice a day, nor after tapering to just 15mg taken only in the am. So, I PCP prescribed Temazepam for me to use as needed years ago, 15mg capsules. I rarely took one. After I started using Prednisone, I told him that they didnt work and could I take 2 at night. He said sure, and prescribed 30mg capsules. These work great. The reason he originally prescribed Temazepam was because they are not as addicting as so many others.
Now that I’m down to less than 5mg/day (1.5) of Prednisone, I have returned to the 15mg Temazepam capsules as needed.
I’m a believer in sleep. That’s when our bodies and minds heal. I learned that Prednisone depletes Melatonin, but I can’t take Melatonin because I’m on a blood thinner due to Prednisone induced Thrombosis, Yes, PMR and Prednisine use can cause a Merry-go-round effect on our systems, pharmacodynamics.
I’m glad to hear that LSN is working for you and you get all the relief that you need to heal fully. Thanks for the LDN share.
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