PMR Dosages and Managing Symptoms

I too am in a fog about this PMR. I have been going through this for about 19 months. I tapered down once and was off Prednisone for about 4 days when the symptoms started to come back. My Rheumatologist said to go back to 8mg and taper down by 1/2 mg a month. When I last saw my primary doctor, she said that by going back to prednisone, I might never be able to get free of it again!! Is this true? The thought of that scares me. Anyone else have this problem?

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I think that is an oversimplyfication. I first had PMR in my mid 40s and my doc never told me what my diagnosis was, but the symptoms and treatment were the same. It lasted about 1 1/2 years and I was down to 5 mg everyother day. I lost touch with that doc and eventually stopped the pred and the PMR didn't reoccur until nearly 30 years later with a lot of other stuff too. I think your best approach would be to taper very slowly and don't push yourself and try to stay healthy otherwise. Easier said than done I know 'cause life happens. But with PMR, nothing is written in stone.

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I too am in a fog about this PMR. I have been going through this for about 19 months. I tapered down once and was off Prednisone for about 4 days when the symptoms started to come back. My Rheumatologist said to go back to 8mg and taper down by 1/2 mg a month. When I last saw my primary doctor, she said that by going back to prednisone, I might never be able to get free of it again!! Is this true? The thought of that scares me. Anyone else have this problem?

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7 mgs. is tough because you're low enough that your adrenals need to kick in but they were sleeping while the prednisone did their job. Hardly a medical explanation, but getting below 7 is a challenge for many. And sometimes it's necessary to stick it out because it's not that the PMR is worse, it's that the adrenals aren't doing their job. And you need to give them time to wake up. Once you stabilize, you could try heading down again very slowly. Half mg. at a time.
Trouble tapering for me involved the return of some symptoms only not as severe as when I was first diagnosed.

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Hi everyone. I know there's a topic about tapering, but it has a lot of data in it about how to taper, when to taper, etc - and I'd like to focus on the people's experience with withdrawal symptoms so I can hopefully prepare myself to understand them if they appear... I also think it would be helpful for those, like myself, that just found out they can mimic a flareup.

Any general experiences with withdrawal would be extremely helpful I think, and if anyone would like to respond to my personal situation, I've detailed it below. Thanks to all - this is a fantastic resource!

My situation:

As I've mentioned, I'm fairly recently diagnosed (symptoms came on fast in September, diagnosis in late Oct) and began with 40mg of pred a day which kept me from becoming completely disabled (I was well on my way). After some back and forth during blood work etc, my rheumatologist confirmed the diagnosis and I went with 40mg/day, with a plan to taper by 5 mg/day every month.

I followed that for two months with no increase in pain, and just recently (5 days ago) tried accelerating just a bit, dropping from 30 to 25 after two weeks instead of waiting four. My reasoning was that I could tolerate a bit of pain in exchange for less pred side effects sooner.

Things were pretty O.K (a very small pain increase in the morning, but easily tolerable), but today I woke up pretty disoriented - I almost feel a bit drunk if I'm up and moving around. Very unpleasant and not easy to put my finger on.

BP is normal (it's controlled with meds though), and I'm not sure what's happening. Has anyone had withdrawal symptoms like that, and do they go away or should I bounce back up to 30 for a bit?

Thanks so much.

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Hello @analog. You will notice I have moved your post into an existing discussion on PMR dosage. I did this so that you may connect with other members who may have also experienced withdrawal symptoms that you are interested in learning about from others. You can find your post here:
- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Members like @karinaph @tillysam @jfannarbor and @floridabonnie may be able to come in and offer you some support based on their experience.

How are you feeling now after several hours?

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Hi all. I do think it is best to seek out a rheumatologist for treatment of this disease. My rheumatologist commented that many people are on high dosages of prednisone for way too long. PMR and GCA (Giant Cell Arteritis) are companion disorders. I've been diagnosed with both. GCA is more severe - so I was put on 40 mg. prednisone for two weeks, initially (given my size = about 100 lbs), then told to taper down by 5 mg. every two weeks, but if symptoms returned to go back up to the previous dosage. Luckily, I had no flareups while tapering down. I am now down to 10 mg. The doctor said to stay on this dosage for a month, then taper down by 2.5 mg for a month, etc. I do get a sense from reading posts that many people are left on their own to figure out tapering. Prednisone is such a powerful drug with so many side effects that it seems most doctors want to get patients down to the lowest dose possible to manage symptoms, and it is trial and error. We basically have to stay on prednisone until our immune systems calm down...and then it seems, they can get excited again. Cecil and Goldman's Textbook of Medicine states that "Steroid treated PMR + GCA are self-limited illnesses..." Eventually, they burn out, for some, sooner than later.

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