1. < Polymyalgia Rheumatica (PMR)
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Weakness won't go away

Posted by LinaXYL @linaxyl, Sep 15 11:37am

I've been on methylprednisolone for 3 years and down to 6 mg without pain and tapering (again) down to hopefully 2 mg. I can't seem to get off the steroid without my levels going up again. In the past I've been so weak I could barely stand and I worked myself up to be able to exercise a bit and do most things again - just not too many in one day. Suddenly I'm very weak and having trouble walking and today I thought I was going to collapse when I vacuumed. I don't see my doctor until Nov. I guess I thought that once I got stronger again I would stay stronger. Will this weakness come and go or is it here permanently? I can't seem to get past it like I did before.

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tweetypie13 | @tweetypie13 | Sep 24 9:43am
In reply to @paul767 "Yes Tylenol definitely helps me with the pain. I take two extra strength capsules late morning..." + (show)
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Yes Tylenol definitely helps me with the pain.
I take two extra strength capsules late morning and two more before i go to sleep around midnight. I was concerned that if taking the Tylenol with Prednisone would do more damage to my body. I checked with my liver specialist and she told me that taking no more than 4 Tylenol extra strength capsules a day is perfectly safe and will not harm my body. I even reached out to my pharmacist and they said the same thing, I was also told to stay away from Advil??

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Keep asking.
Be sure and explain you are taking Tylenol for ARTHRITIS, not extra strength Tylenol. There is a difference and my Rehumy made it clear to me.

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Howdy! | @kereno | Sep 25 7:37am
In reply to @paul767 "Yes Tylenol definitely helps me with the pain. I take two extra strength capsules late morning..." + (show)
Profile picture for paul767 @paul767

Yes Tylenol definitely helps me with the pain.
I take two extra strength capsules late morning and two more before i go to sleep around midnight. I was concerned that if taking the Tylenol with Prednisone would do more damage to my body. I checked with my liver specialist and she told me that taking no more than 4 Tylenol extra strength capsules a day is perfectly safe and will not harm my body. I even reached out to my pharmacist and they said the same thing, I was also told to stay away from Advil??

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@paul767 yes. Stay away from Advil (ibuprofen). It is contraindicated.

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Howdy! | @kereno | Sep 25 7:45am

I tell myself I’m older than I was, I’ve gotten out of shape during this spate with PMR, and I have learned the importance of rest. But now just a month off Pred., I am really needing to reapproach my best life in a new way. Yes to balancing stretches to aerobics to rest. All important. I’ve been continuing my water walking throughout but adding in land walking today. I have recently added back in my own version of mat exercises (recalled from yoga, PT, Pilates). Just movement and rest. Let’s see how far into recovery we can go. Given another post today, I will add vit D3 back into my self-care routine.

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tweetypie13 | @tweetypie13 | Sep 25 7:51am
In reply to @kereno "I tell myself I’m older than I was, I’ve gotten out of shape during this spate..." + (show)
Profile picture for Howdy! @kereno

I tell myself I’m older than I was, I’ve gotten out of shape during this spate with PMR, and I have learned the importance of rest. But now just a month off Pred., I am really needing to reapproach my best life in a new way. Yes to balancing stretches to aerobics to rest. All important. I’ve been continuing my water walking throughout but adding in land walking today. I have recently added back in my own version of mat exercises (recalled from yoga, PT, Pilates). Just movement and rest. Let’s see how far into recovery we can go. Given another post today, I will add vit D3 back into my self-care routine.

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@kereno
Yes, my path exactly and it’s been working 🤞
10wks post prednisone stop, and 28 wks on Kevzara.
And yes, “I tell myself I’m older than I was….”
Well said.

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tweetypie13 | @tweetypie13 | Sep 25 8:33am
In reply to @kereno "I tell myself I’m older than I was, I’ve gotten out of shape during this spate..." + (show)
Profile picture for Howdy! @kereno

I tell myself I’m older than I was, I’ve gotten out of shape during this spate with PMR, and I have learned the importance of rest. But now just a month off Pred., I am really needing to reapproach my best life in a new way. Yes to balancing stretches to aerobics to rest. All important. I’ve been continuing my water walking throughout but adding in land walking today. I have recently added back in my own version of mat exercises (recalled from yoga, PT, Pilates). Just movement and rest. Let’s see how far into recovery we can go. Given another post today, I will add vit D3 back into my self-care routine.

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@kereno
PS: I must add, I have had a lot of dark days filled with lows. At no time did I ever believe I would/could see a return to “my old self” as I knew it.
WRONG….hang in there everyone and keep fighting!

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