PMR Dosages and Managing Symptoms

Hi there- There’s a lot of great feedback and shared experiences about this here: https://connect.mayoclinic.org/discussion/pmr-dosages/ if you want to check it out.

What was your previous dose before you got to 10 mg? Maybe you can either go back to your original dose for a while to get to your baseline, then try again to taper but don’t go down as low.

That’s awesome you’ve made it to 10 mg. It can get tough getting down to the lower numbers… Unfortunately tapering isn’t always linear. Some people have to increase again to get back to baseline after having a flare, and taper even more slowly, especially when you hit 10 mg and below.

Others have shared about using other medications to help them wean off prednisone if you want to look up “Actemra.” In my experience, it’s not really a first choice for providers. They’ll have you taper more slowly first, usually, or go back up before titrating again. My dad has PMR and central sensitivity to medication; he has to taper very slowly.

Before he for too 10 mg, he took 15, then alternated 15 and 12.5; then 12.5; then alternated 12.5 and 10; then 10; then alternated 10 and 7.5.

Then he had a flare trying to get below 7.5. We had to go to 6.25 mg (it’s 2 and a half 2.5 mg tablets).

Others have reduced by 1 mg or less even. There are 1 mg and 2.5 mg tablets available. My dad’s doctor prescribes different variations to make the tapering easier. Wishing you all the best!

I've gone from 15mg daily to 12.5. This is day six and I am having slght pain but determined to see this next 24 days out. I will ask the dioctor about decressing 1mg at a tine rather than 2.5. It feels like that's because I get the 5mg pills and 1/2 of one is 2.5.
That's the plan anyway.

Definitely ask about getting 1 mg tablets. We all have enough to worry about without adding to our burden by having to split prednisone pills in half. Many patients find it difficult to do a 15 mg to 12.5 mg decrease.

I have known patients who cut their 1 mg tablets in half. I personally have never had the need to cut 1 mg tablets in half but to each their own. Maybe that was where I went wrong. It took me about 10 years before I got to a low enough dose where I used 1 mg tablets.

When I got off prednisone, I still had 20 mg tablets, 10 mg tablets, 5 mg tablets, 2.5 mg tablets and too many 1 mg tablets to count. I recently threw my entire stockpile of prednisone pills away. All of my pills had been past the expiration date but I hung onto them for as long as I dared.

If a doctor asks why you need 1 mg tablets just say that you want to increase by 1 mg sometimes instead of a whole 5 mg. I'm sure they would rather you increase in 1 mg increments when needed as opposed to going back to a much higher dose.

I’ve had to increase by a quarter pill before, not because I wanted to, but because I couldn’t tolerate increasing any more quickly >_< Thankfully, my doctor(s) were understanding. Those were much larger tablets than prednisone though.

Uveitis doses prescribed by my ophthalmologist usually took 60 mg to 100 mg to start with followed by a fast taper.

I also had a sympathetic GP who didn't want me to run out of prednisone. I once messaged my GP to let him know that I wanted to jump up 100 mg of prednisone per day for the electrical headaches caused by trigeminal neuralgia (TN). My GP called me back immediately and asked me if I was sure that 100 mg would be enough.
https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Trigeminal-Neuralgia#:~:text=Trigeminal%20neuralgia%20(TN)%2C%20also,nose%20and%20above%20the%20eye.
I couldn't tolerated 100 mg very long but TN seemed to respond to that high of a dose.

Not to mention the prednisone my rheumatologist prescribed for PMR in addition to spondyloarthritis even though oral corticosteroids are not recommended for spondyloarthritis.

Kurt25, as I have read elsewhere, you are not relentlessly tapering to 0, but to the lowest dose to manage your inflammation. It appears you are not ready to taper to 10mg. Timing is as they say everything. You may need to taper slow the lower you go. For some that can be .5 mg over a 7 week taper. Slowly, slowly gets it done. Good luck. PMR comes with its own schedule.

About tapering: I am now down to 12.5mg, having started at 20, then 30, then 25, then 20 again. When I got to 20 (weekly tapering) I began a 2.5 taper per week. Now I am at 12.5 and fingers crossed, no pain. My doctor said when I reach 10mg (next week) I will taper 1 mg per month. I was surprised she said per month. As I do the math it will take me 10 months to get off this medication if all goes well. I am reading and hearing from others that the taper when under 10 mg has to be really slow so the body can adjust. Of course the caveat is that some of our bodies “adjust” better than others. I am also prepared to take a very low maintenance dose of prednisone if that will keep the PMR pain at bay. When I get under 10mg I will let you know how things are going. Happy Fourth of July to all. Let’s try to have some fun today and put PMR in the back of our brain for a while! Liz

Hi Kurt @kurt25, I would like to add my welcome to Connect along with @emo, @vellen, @mary4 and others. You will notice that we moved your post to an existing discussion on the same topic here. If you click the link below it will take you to the top of the discussion where you can read what others have shared.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

You might also find the following related discussions helpful:
--- Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/
--- Prednisone tapering is challenging. What does remission feel like?: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/
--- Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/.

Do you keep a daily log with your level of pain and the dosage of prednisone for that day?

Hi was on 15 prednisolone for PMR but tappering down now on 5 but can feel pain coming back and so tiered & also boiling all the time , wanted to come off these tablets but think im going to have to increase any advice please , also since been on this medication skin on face gone very bumpy

Hello @jaq, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic so that you can read the experiences of what others have shared. If you click the link below it will take you to the beginning of the discussion:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

My rheumatologist had me keep a daily log to track my pain level and my prednisone dosage. He also told me that everyone is different and to listen to my body when tapering to a lower dose of prednisone and to not taper down unless I have little to no pain.

I think I would call my doctor or rheumatologist and let them know about the new skin symptoms on the face. Do you keep a daily log to track your tapering?