An Experiment Without Doctor Approval

15mg is the bottom of the dose range as recommended in the 2015 Recommendations. Many people require 20mg or even 25mg to get full relief. An Italian study also found that there was a difference in response related to the size of the patient - larger men needed more than smaller women. Debbie is a prime candidate for needing a higher dose.

Hi Kathy, I completely agree about pain relievers! Before I got correctly diagnosed with pmr, my primary put me on "Norco" for a few weeks (a narcotic). It didn't do a thing except give me horrible withdrawal symptoms when I stopped taking it! NEVER again! On the other hand, when I finally started seeing a rheumatologist, after a few Hours of 15mg of prednisone I was virtually pain free! Go Figure!

Hi, Lynda

 Yes indeed! Those narcotics are bad ju-ju😩

  Stay away from them. They absolutely serve there purpose but not for PMR.  Prednisone is the only drug that relieves the horrific pain we suffer. I too, gained substantial weight from the prednisone. About 65lbs so far. My hair is falling out by the handfuls and my face closely resembles a huge-ass 🎃!

  All nasty side effects of the prednisone, but I’ll be the first say say that none of it is as bad as PMR pain.

 Sitting here typing this, I grimace because I’m in a full blown flare because I tapered 5mg’s last week. I was comfy at 15mg but always trying to taper. Three days into taking 10mg’s, I flared hard.  I tried though! I’ve spent the last four days in tears, having my husband get me out of bed and slipping a dress over my head. 

 I absolutely hate this God awful disease!  Having people like yourself who know full well what I’m going through, helps a lot.??

First...let's be clear. I love pumpkins (Autumn's my favorite time of year!) So if your face is "pumpkinish", you are totally appropriate for the season Seriously tho, I'm so sad to hear you're having a bad time. This whole journey, both illness and treatment, are BRUTAL! How long were you on prednisone before your weight gain and hair loss? And how many mg did this start occurring? I'm SO nervous about what the future holds

Most people could not reduce your dose by 33% and expect to feel OK afterwards. In tapering a dose no reduction should be more than 10% of the current dose and for many people even that causes problems. 

Reducing by so much at one time is very likely to lead to something called steroid withdrawal rhuematism and the symptoms are so similar to PMR that you can't tell whether it is withdrawal or a flare. Also, you are not reducing your dose to get off pred but looking for the lowest dose that manages the symptoms as well as the starting dose did. That varies over time - in the early stages of getting control of the symptoms it will be higher than later in your journey - so jumping too far may well take you below the dose you need AT PRESENT and that will allow the inflammation to flare up and cause symptoms again. It doesn't mean you won't get lower, just not yet. Since you say it took a few days, you have most likely gone below the dose you need now, steroid withdrawal usually starts on the first or second day of the new dose and then improves over a couple of weeks. A flare mostly takes at least a few days and steadily gets worse. But assuming it is withdrawal may get you into the throes of a major flare that becomes increasingly difficult to get under control.

If you repeatedly try to drop 5mg from 15mg you are likely to have the same effect again and again - as I say it could be either a flare or withdrawal - and never manage to get lower. Try reducing 1mg at a time - you can get 1mg tablets of prednisone - or, at the very least cut the 5mg tablet in half with a pill cutter and then alternate the old and new dose for a couple of weeks. 

Or use the DSNS approach you'll hear spoken about on the forum quite a lot:

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

It is the first pinned post on this page and also makes an appearance in the replies part of the resources post which is the fourth.

Hi, Eileen 

 Everything you said is correct. Apparently I failed to mention the introduction of a second medication a month ago. I am also receiving an injection once a week. Actrema.  My Rheumatologist felt it was safe to try dropping 5mg’s.  Earlier this year I did indeed suffer steroid withdrawal. I felt awful and my skin began to peel as though I had a nasty sunburn. That sucked!  This time I have none of the withdrawal symptoms, but I did have a high stress situation I was dealing with. I do my level best to stay calm because stress sends me into a flare every time!

  Also, I misspoke about my dose. I cut a 5mg in half, so I’m actually taking 12.5mg’s at present. I have been on this journey for eighteen months now.  It’s just the tip of the iceberg as PMR goes, but I’ll continue to do my best to taper. 

  Thank you for the link. I’ll be reading a lot this morning♥️

Good morning, Lynda😊

 I’d Hays it took maybe three months before I noticed that there was more hair in my brush than on my head, but those first three months, I was on high doses of prednisone. My hair is growing back, but it’s goofy looking because I have long hair with wispy growth all over! 

 No biggie though. It’s just hair🤷🏼???

 I misspoke on my last comment. I am actually at 12.5mg’s at present. Eileen brought to my attention the fact of steroid withdrawal. Been there too! 

 As she said...The goal is to find the lowest dose possible to keep you comfortable.??

Yes - the Actemra makes a difference to being able to reduce pred with fewer flares. But while the Actemra helps get to a lower dose of pred for many people it isn't perfect either - and not all patients are able to get off pred entirely. That was obvious from the clinical trials for GCA and there is no way to know which group you belong to. I have already come across 3 people on Actemra who have got to about 10mg and flared. The Actemra will also do nothing to mitigate steroid withdrawal.

Some doctors seem blissfully unaware of this and encourage reduction steps that are simply not fair on the patient's body. It's difficult - with or without Actemra.Just Actemra may make it easier to get to a lower dose - no guarantees.

 

Lol...whatever is right! Jeez, a person can't catch a break. So what is this ailment all about? Sounds like it might be a "cousin' to pmr. Same type of symptoms and same treatment. What is this test?

Doesn't sound like the sfn the people I know have. But as you say, whatever!

If it isn't - I wonder what the next opinion will be. I'd be looking for another rheumy...