Prednisone love/hate support group

I’ve only watched the first video, but I found it really helpful in putting my current condition in perspective. I got down to 2 mg a couple of days ago. Today I was vacillating between some familiar exhaustion and some unusual bursts of energy. I’m sure it will take time to be able to tell how well the taper is going, and if my adrenal’s are truly starting to wake up.

@dadcue and @johnbishop

Hi Mike and John. I am in a point of trepidation and would appreciate your reaction. You may remember that when i had my PMR-esque initial onset of RA a dozen yrs ago, i really had global joint involvement - hips, shoulders, ankles, hands, feet. my awesome doc in NYC decided to save heavy doses of prednisone to try Humira first
- and it was miraculous. Since then ive had prednisone for flares and joke that i don't know what the big deal with narcotics is - give me Prednisone any day. But it has always been 10-15 mg for a week and then tapering off easily.

Skip to a week ago. I began to have knee pain - one sided. Could hardly walk so got neoprene sleeve and bigger wraps. And then… here comes hips and ankles and feet and hands. And now it seems global. Even big muscle groups.

Today Doc called in 30 mg of Prednisone x4 days then 20x4 days, then 10, then off

I don't think i have ever been at a 30mg dose and it scares me a bit. Will I sleep at all?? Do i take it all at once in morning? Are there
Other risks? I mean I want to deal with the pain but this feels like a bazooka.

Mike, I know you used to take 60 for your eyes as I recall, so thought you could tell me to get over myself 🙂

Thanks
Pam

Hi Pam @pb50, Only my initial onset of PMR when I was first diagnosed did I feel the type of pain you are describing. The flare ups I had when tapering off before the PMR went into remission didn't feel as bad as what you are experiencing. My rheumy was always telling me to watch for facial and head/jaw pains because he was concerned about GCA and vision being affected. 20 mg prednisone was the largest dose that I took for both of my PMR occurrences.

It might be worth a discussion with your doctor on trying a lower dose for a few days to see if it gets rid of your pain vs starting at 30 mg. Mike @dadcue has a lot more experience that I do so may have some better suggestions. Do you have any swelling in the hands or feet that goes along with the pain?

@johnbishop i just had the same thought! I just can’t wrap my head around 30mg. Also, in the past i have weaned down from 10 so I can’t see myself just abruptly stopping. So i will drop to five for 2-3 days.

Thanks for helping me work through it.

@johnbishop and to answer your question, as a rule i am not inclined to much joint swelling. I do have some mild swelling in the painful knee but that's it. I am inclined to weakness and pain.

@pb50 Hi Pam

For uveitis, I used to start at 60 mg per the instructions from my ophthalmologist. I was given permission to increase my dose as needed upwards to 100 mg if the uveitis didn't respond. I would quickly taper back down after the uveitis "responded" which was when there was an improvement in the inflammation inside my eye.

Uveitis offers a unique visualization of inflammation so my ophthalmologist and I could tell how the inflammation responded. This "real-time" observation of inflammation is valuable because both my ophthalmologist and I knew when there was a reduction or elimination of inflammatory cells. Knowing precisely how much inflammation was present confirmed the dose of prednisone that I needed and how quickly I could taper off prednisone.

For uveitis, I could usually taper off within a month and uveitis would stay in remission for a year or so. I lost count at over 30 flares of uveitis in 20 years. I got a lot of practice taking prednisone and tapering off again.
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After PMR was diagnosed, I started out with 30-40 mg but I could not reduce my dose very much for about 10 years. I had many reasons for taking prednisone and my doctors understood why I needed so much prednisone. My doctors never questioned my judgement. I didn't have too many qualms about taking 100 mg when needed. I could handle 60 mg of Prednisone reasonably well but that was my "self imposed limit" without guidance from my doctors. I would tell my doctors if I ever needed more than 60 mg. My "absolute limit" was 100 mg. If my doctors ever wanted me to take more than 100 mg -- I refused because I can't tolerate that much.
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I'm concerned that you now need significantly more prednisone than you did. Doubling your usual dose suggests something that isn't good is happening. However, I'm not overly concerned about 30 mg as long as you can still reduce that dose back down to your usual dose and eventually taper off again. Getting "stuck on prednisone" isn't a good situation.

@dadcue thanks Mike. I looked at the instructions and he actually called for me to start at 40mgx3 days then 30x3 days through 10x3 days and then jump off. I decided I am not doing 40 but rather to do one dose of 30 and see how i react. If I am good I will finish out as instructed. But I am going to wean down to 5 mg before jumping off.

I was surprised too. This was all done by message. I had suggested an mri to evaluate the knee pain issue and he came
back with this plan.

My guess? He fears medicare bitching about the MRI order. If he does this and I still have knee pain, he will be justified.

@pb50
I have a lengthy response but think it is relevant to how PMR may start for some people. I had knee pain in 2018 and I 2025.
Knee pain is exactly how my PMR starts. I had to use crutches as I couldn’t put pressure on my right knee or bend it. I took 3 Aleve and elevated the knee and would get relieve. I had hip replacement surgery within 3 months of this knee pain happening. So my 2018 episode was hidden by my surgeries.
Same knee pain came st the beginning of 2025.
Very soon after I started getting sore hips then shoulders then whole body pain that kept me from getting out of bed pain. I went to a knee specialist oth times and they said my knee was fine. And it is. My knee is pain free except for this. I wonder if anyone has had a similar one joint flare up before heading to the rest of the joints?

Yes!! Though I have RA , my flares are almost always progressive from one area to others. That is fascinating. When i had my onset of clinical symptoms in 2012, it was progressive from one hand, two hands, shoulders, hips, knees, ankles and feet. One day i had nothing, and two days later I could not open a door or a bottle of water and could hardly walk. . I was blessed that I was working for a senior exec in NYC and he got me an asap appointment with an awesome Rheumy. After other drugs, Since 2017 I have been well controlled on Remicade.

I honestly thought I had a tendon rupture in my lateral knee even though i don’t have a clear event to point to as cause. I even mentioned that maybe we were doing high dose Prednisone (for me) as a precursor to an MRI. Medicare seems to challenge a lot lately and i thought my doc wanted to prove necessity.

But he is smaeter than me 🙂
And as it always has for me, Prednisone wipes every ounce of pain away. I mean I couldn’t walk without limping, which was making my hip hurt. And today it is 80% resolved. It even eliminates other background pain I have all the time.

This stuff scares me a bit but it sure is awesome. I did however cry today at the ending of NCIS for no reason 🙂

I am on day 1 of 9 days

Knee Is Much better. Don’t have to limp, though when my leg is straight for long all the swelling seems to move to the back of my knee- making bending it difficult. So there is still swelling and some pain. But i have one more day at 30mg and then I start weaning ..