Diagnosed in 2017, started on 7mg prednisone. Stayed on that amount for over 2.5 years that with a few increases to 8mg then back down to 7mg. Had a couple of flares during that time but I was always able to move back to 7.5-8mg after flare was over.
End of 2019 I had to increase my pred to 9mg , then 10mg and now I am on 11mg. I have tried to taper, very slowly. But I can't go below 11mg.
Thoughts on why I would need to increase? Does this mean my PMR is getting worse?
Health has been good, with the exception of a newly diagnosed aneurysm, essential tremor, tarlov cyst on my lower spine and numbness, tingling on one thigh that comes and goes.
Any thoughts are appreciated.
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Sunnyd7
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Must admit having read through previous posts I find it strange that you seem to have been around the 7-8mg mark all the time - with a few forays either up or down over the last 5 years. The usual recommended starting dose for PMR is 15mg, with 12.5mg being the absolute lowest.
Any reason why you started at such a low dose?
I would say that is where all your problems lay - your dose has never got full control of your inflammation at any time.
I think you need a Rheumy or GP who understands your illness - or maybe looks at your diagnosis with new eyes.
A rheumy diagnosed my PMR. In the beginning I told him I had no pain at 7mg and I didn't want to take more pred than was necessary. He told me 15mg is usually where we start. I asked to just take 7mg and see how it goes. He said ok.There have been alot more stressful events in my life since 2019. I did call my Rheumy's office and they asked how I was doing, I said fine. I asked if he would like to see me since its been 2 years since my last appointment. He said no.
So here I am. Thank you for answering. I appreciate it.
Well in that case you need 11m or maybe more. I think you need to discuss with doctor, or maybe a new one to get yourself on track and get your illness under control, whic I’m not sure it has been in the past.,
So that I am understanding correctly, even if I had no pain at the 7.5mg, I still should have been concerned about the inflammation? Is that the focus of the higher does in the beginning? Because the inflammation causes the pain? Thank you so much for helping me.
The inflammatory substances are produced every day when you have an illness like PMR - and it may vary how long it takes that inflammation to cause pain. Even it doesn’t cause pain, you can never be sure whether the inflammation is causing unseen damage to organs etc.
As you suggested to PMRPro it might be sensible to try 13 or 15mg for a couple of weeks and see if that makes a difference.
I suspect you need a bit of time at above 11mg to clear out accumulated inflammation to have a sort of re-set and then find the dose you need now. Otherwise you aren't going to get on top of it - and if the truth were told, you never have been with having started with such a low dose. That is warned against in the guidelines. Look at a short time at a higher dose as the springcleaning before doing the daily dusting.
Thank you for responding. I was thinking about upping my dosage last night but didn't know if that would be good or not.Should I go up to 13mg or maybe 15mg? And take the increased dosage for a month? Does that sound reasonable?
I have found great success in tapering after I started taking 1 mg Valcyclovir daily.This was based on some research that inflammation phases could be triggered by reactivation phases of Varicella zoster virus dormant at nerve roots , the virus being present there from a possible exposure from the far past.
This is no way advised as standard medical practice but is certainly being researched at the moment. It has also helped me to taper the pred better.
The Valcyclovir is not too harmful in terms of side effects too.......
The recommended dose is 1 mg twice a day but I take 1 mg once a day since my liver profiles were a bit disturbed with a twice a day dosage.
I feel that starting out on 7mg is TOO low of a dosage especially after just being diagnosed. Most including myself started out on a much higher dosage. I started on 20mg a day & tapered down until the pain came back which initially was @ 10mg. I tell everyone to find what I call their happy median (a minimum dosage you can take & remain pain free) & each time you attempt to taper down IF the pain returns you slowly taper back up until the pain goes away & usually you will find it’s that happy median that you return to that makes you pain free. For me mine is 15 mg a day BUT the last time I went to my Rheumatologist he told me the blood he had taken on the visit prior looked better than it ever had & that he thought my PMR might be in remission after over 4.5 yrs. & so far I’ve tapered down to 10mgs & NO pain 🤗. In fact today I am going to taper down to 7.5 & see how that does & if I experience no pain the remaining tapers will be 1mg @ a time because once you get below 10-7.5 mg you should start to taper less. But for you if you are experiencing any pain I would slowly taper up until it goes away & call that your happy median & that is subject to change. Don’t be over anxious & taper down too quickly. I do every 4 to 6 weeks, you can also try every couple of weeks & see how that does. Good luck in your journey & Prayers that you will soon be in remission.
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Looking forward to it though 
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