Down to 1mg prednisone and then extreme fatigue sets in.

Posted by allinge @allinge, Jun 20 9:25am

I was diagnosed with PMR in January after ending up in emergency with extreme pain and unable to walk. In the hospital they gave me Prednisone 35-40 mg and an hour later, I felt such relief. Over these past months I've tapered down to 2mg last week and then to 1mg three days ago. Suddenly I'm in pain all in my legs, arms and back. I upped to 2mg but no relief yet. The strange thing is how extremely tired I've become in the mornings and the pain doesn't subside till late afternoon. Just wondering if anyone else has experienced this?

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Profile picture for heals1225 @heals1225

Thanks Meg, that makes sense for me not to continue tapering today. This morning my pain is not good and to reduce my dosage only creates fear in having same or even more severe morning pain. Since 5 mg for June was never a comfortable dosage for me I am actually considering taking 5 mg this morning and 1 additional mg this evening. I really don’t want to increase my dosage but I feel like I have no choice. Maybe just for one or two weeks and see what happens. Thanks for your advice as it is good to know we have have support from people who know what we’re going through.

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Sounds like a good plan. Best to move back to your last effective dose of 6mg (split dose) to hopefully avoid pain/inflammation settling in and inviting a flare which could require a bigger increase.

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I know no one is excited to add more meds but I started Cymbalta and the difference is astounding. The fatigue is gone. I almost feel like my old self again. Any pain is very minimal. I just dropped from 2 mg Prednisone to 1 mg and I still feel good. I had an adjustment period with the Cymbalta but those side effects have resolved (sleepy, low blood pressure). Cymbalta is an anti-depressant but my primary care said it's been very successful with chronic pain. Works for me!

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Profile picture for jimp @boo3

Diagnosed in December by GP and he put me on 20mg of prednisone and relief was almost immediate. Over last six months have attempted to wean to lower doses, but found that I may have tried too soon. Original excruciating pain in shoulders and hips went away but then pain in hands, (fingers and wrists) and knees. Questioned rheumatologist about that and was advised that it was probably OA so I continued my weaning thinking that new pain was not related to PMR. WHEN I GOT TO ABOUT 2mg and realized pain was a bit over the top reached out again and was told that though PMR does not generally attack the hands and knees it was possible that it was the cause of that pain. Huh? Anyway back up to 14mg with lots of relief. Posting this so those new to PMR and prednisone can see that though our doctors are good they are still practicing and using this forum is probably the best way for all PMR people to make good judgements on their own and for themselves.

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I also had pain in knees and thumbs and was told it wasn't the PMR causing it but it was bilateral (just like shoulders and hips) and went away when my PMR was treated with prednisone.

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I am having almost the exact same reaction. A month ago, I had a physical with my PCP and I was in no pain. She said it was time to get off prednisone and I agreed. Discomfort started at 3mg but I kept tapering and took Tylenol which helped a lot. I have been prednisone free for 4 days and am very stiff in the backs of my knees and shoulders. I am very reluctant to start prednisone. I’m worried that trying to tough it out will harm my body in the long run.

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I haven't read through all of the comments, so please forgive me if I'm repeating any questions or replies. I was diagnosed in the beginning of 2024 and started at 20mg. I also was unable to walk upright, and in extreme pain. The prednisone was an instant (temporary) cure. Since then I have tried a number of meds to try to get off of the prednisone. Methotrexate first. That was bad news for me. My platelets tanked and my white blood cells went up. I had three months of that and had to get off of it. I then went on leflunomide. That also was bad news. It made me lose control of my bowels. Then my Dr. prescribed Actemra Actpen. My employer provided insurance "Gold Plan" would not cover it.
I started LDN in the beginning of June. 1,5mg to start and titrated up to 4.5mg. I have no more Chondro Calcinosis, and my bloodwork no longer show PMR. I am beginning to taper from 2.5mg of prednisone to 2mg tomorrow. My only concern is that I need to watch my BP from going too low.

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Profile picture for susanalka @susanalka

I am having almost the exact same reaction. A month ago, I had a physical with my PCP and I was in no pain. She said it was time to get off prednisone and I agreed. Discomfort started at 3mg but I kept tapering and took Tylenol which helped a lot. I have been prednisone free for 4 days and am very stiff in the backs of my knees and shoulders. I am very reluctant to start prednisone. I’m worried that trying to tough it out will harm my body in the long run.

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Im in the same boat. One week clear of prednisone and plenty of stiffness. I am dealing with it by stretching exercise and napping. Vitamin B12. Cheers.

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Profile picture for susanalka @susanalka

I am having almost the exact same reaction. A month ago, I had a physical with my PCP and I was in no pain. She said it was time to get off prednisone and I agreed. Discomfort started at 3mg but I kept tapering and took Tylenol which helped a lot. I have been prednisone free for 4 days and am very stiff in the backs of my knees and shoulders. I am very reluctant to start prednisone. I’m worried that trying to tough it out will harm my body in the long run.

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These medication‘s for PMR are very very difficult to figure out what the best thing for you is as each of us reacts so differently to each medication. For me nothing worked for my PMR. When I was on prednisone and tapered to 2 mg it worked great for me but my rheumatologist said no no no no you have to go to one milligram. When I was on 1 mg I had a lot of aches and pains. With PMR there’s so many choices you have to make . for me it was not easy at all. At times I feel like hit or miss but it rheumatologist. It’s very difficult for the rheumatologist also each of us react so differently to each medication. My very best wishes to you going forward!!!

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Can anyone suggest if taking magnesium supplements while taking prednisone is beneficial? If so, how many mg would you recommend for women?

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Profile picture for megz @megz

Maybe you could consider staying on 5mg a week or two more to stabilise before reducing further? It may help. I started the .5mg reductions from 7mg, so it's been a bit slower than your last few reductions of a whole mg in a month.

Once your 5mg pain has resolved, have you thought of splitting the dose to better control morning pain? You may not want to change your dose habits at this stage, but I've been splitting the dose and taking 1mg of my daily dose in the early evening, with no morning pain at all. I figure if I have no pain, it will be easier to notice any new pain. So far, only occasional slight passing aches at the beginning of some of the reductions.

I'm at 3mg and will start the 3-4wk reduction to 2.5mg in a few days.

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Meg, you are a fount of wisdom. I like that split dose approach. I am going to try it.
(An aside: if you are a rose aficionado, what’s the name of the rose in your emblem? No answer needed if not known.)

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Profile picture for allinge @allinge

Can anyone suggest if taking magnesium supplements while taking prednisone is beneficial? If so, how many mg would you recommend for women?

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I've been taking magnesium supplements for several years, including the past year when I have also been taking prednisone. I think magnesium has several beneficial effects, including improving sleep, reducing anxiety, and helping with regularity. I take 250 mg per day of magnesium citrate. Google says a man should get 400 to 420 mg per day, and a woman 310 to 320. I eat a pretty good diet, so I probably get the rest of what I need from food. I try to take the magnesium at a time when I'm not taking any other medications or supplements, at least any that would interfere with magnesium absorption, and vice versa. I take magnesium at dinner along with a small aspirin which the rheumatologist recommended for my GCA. I take a calcium/D3/K2 supplement at lunch, prednisone with breakfast, and thyroid meds 30 minutes before breakfast.

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