John, Volunteer Mentor | @johnbishop | Nov 2 7:43am
That is definitely good news @susan63! It is a great feeling when you can finally stop taking the prednisone and wake up the next day with little to no aches and pains from PMR. Hoping Mr. Ugly never comes back for you!
I have been on Pednisolone since last February have now titrated down to 2mg but seem to be getting a lot more morning stiffness and pains I also have sciatica and lower back pain. I really want to come off of this drug but am unsure as to what to do
I have been on Pednisolone since last February have now titrated down to 2mg but seem to be getting a lot more morning stiffness and pains I also have sciatica and lower back pain. I really want to come off of this drug but am unsure as to what to do
It took me an entire year to taper down from 5 mg to 0. I am serious. I tapered in very small increments - 1/4 of a mg at a time. I learned that for me at least I had to go slow because otherwise I ended up having a flare and having to increase again. I am still having stiffness but I have other issues as well so that is responsible for some stiffness. As long as I don't have the kind of pain I did at the beginning I can handle a little stiffness. Stay at 2mg for a month or so and then maybe try to go to 1 3/4.
No I can't honestly say I am pain free. I have other issues that cause me pain - torn glute tendons (both hips) and posterior tibial tendonitis (both feet). So both of these are in various stages of recovery and are still causing pain. BUT the pain is not the god awful pain that I had in my shoulders, arms and neck from pmr. I can still function with the pain I have right now. I couldn't even brush my hair without being in agony when PMR decided to have a go at me.
Congratulations Susan. I was diagnosed in January 2023 and went from prednisone to Kevzara to maloxicam(Mobic) to one Tylenol in the morning. I still am stiff getting up but once moving around things loosen up. Even at my age never want to take prednisone again.
Congratulations Susan. I was diagnosed in January 2023 and went from prednisone to Kevzara to maloxicam(Mobic) to one Tylenol in the morning. I still am stiff getting up but once moving around things loosen up. Even at my age never want to take prednisone again.
Yeah I will do my best to make sure I never take it again. I was recently diagnosed with steroid induced osteoporosis so that made me all the more determined to get off prednisone forever. Here is to us never needing it again!
No I can't honestly say I am pain free. I have other issues that cause me pain - torn glute tendons (both hips) and posterior tibial tendonitis (both feet). So both of these are in various stages of recovery and are still causing pain. BUT the pain is not the god awful pain that I had in my shoulders, arms and neck from pmr. I can still function with the pain I have right now. I couldn't even brush my hair without being in agony when PMR decided to have a go at me.
good to hear though I”m sorry you have pain other places. Just to be clear, was your shoulder, arms and neck pain pretty much gone? That’s what I’m hoping for and I’m a year and half in to having PMR and although much better than early on, when my pain was much like yours, I’m still uncomfortable and down to 4mg prednisone.
It took me an entire year to taper down from 5 mg to 0. I am serious. I tapered in very small increments - 1/4 of a mg at a time. I learned that for me at least I had to go slow because otherwise I ended up having a flare and having to increase again. I am still having stiffness but I have other issues as well so that is responsible for some stiffness. As long as I don't have the kind of pain I did at the beginning I can handle a little stiffness. Stay at 2mg for a month or so and then maybe try to go to 1 3/4.
I am so very happy for you @susan63 and wish you all the best with your recovery!
Sounds like its been a difficult long journey for you!
How were you able to cut your pill into 1/4 mg? My 1 mg are so small already that cutting in halves is challenging.
I also have been trying to wean off but as soon as I reach 7.5 mg I flare up and have to go back up to 12.5 mg. I still have morning stiffness at that dose but manageable. So once I hit 10 mg again I'll try going down by 1mg instead of 2.5. It has been trial and error. My biggest one was in trying to rush getting off it.
good to hear though I”m sorry you have pain other places. Just to be clear, was your shoulder, arms and neck pain pretty much gone? That’s what I’m hoping for and I’m a year and half in to having PMR and although much better than early on, when my pain was much like yours, I’m still uncomfortable and down to 4mg prednisone.
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That is definitely good news @susan63! It is a great feeling when you can finally stop taking the prednisone and wake up the next day with little to no aches and pains from PMR. Hoping Mr. Ugly never comes back for you!
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4 ReactionsI have been on Pednisolone since last February have now titrated down to 2mg but seem to be getting a lot more morning stiffness and pains I also have sciatica and lower back pain. I really want to come off of this drug but am unsure as to what to do
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4 ReactionsIt took me an entire year to taper down from 5 mg to 0. I am serious. I tapered in very small increments - 1/4 of a mg at a time. I learned that for me at least I had to go slow because otherwise I ended up having a flare and having to increase again. I am still having stiffness but I have other issues as well so that is responsible for some stiffness. As long as I don't have the kind of pain I did at the beginning I can handle a little stiffness. Stay at 2mg for a month or so and then maybe try to go to 1 3/4.
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9 ReactionsCongrat’s!!! Please update us from time to time as to how you’re doing. Also wondering were you pretty much pain free at the time that you stopped?
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1 ReactionNo I can't honestly say I am pain free. I have other issues that cause me pain - torn glute tendons (both hips) and posterior tibial tendonitis (both feet). So both of these are in various stages of recovery and are still causing pain. BUT the pain is not the god awful pain that I had in my shoulders, arms and neck from pmr. I can still function with the pain I have right now. I couldn't even brush my hair without being in agony when PMR decided to have a go at me.
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2 ReactionsCongratulations Susan. I was diagnosed in January 2023 and went from prednisone to Kevzara to maloxicam(Mobic) to one Tylenol in the morning. I still am stiff getting up but once moving around things loosen up. Even at my age never want to take prednisone again.
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1 ReactionYeah I will do my best to make sure I never take it again. I was recently diagnosed with steroid induced osteoporosis so that made me all the more determined to get off prednisone forever. Here is to us never needing it again!
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1 Reactiongood to hear though I”m sorry you have pain other places. Just to be clear, was your shoulder, arms and neck pain pretty much gone? That’s what I’m hoping for and I’m a year and half in to having PMR and although much better than early on, when my pain was much like yours, I’m still uncomfortable and down to 4mg prednisone.
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1 ReactionI am so very happy for you @susan63 and wish you all the best with your recovery!
Sounds like its been a difficult long journey for you!
How were you able to cut your pill into 1/4 mg? My 1 mg are so small already that cutting in halves is challenging.
I also have been trying to wean off but as soon as I reach 7.5 mg I flare up and have to go back up to 12.5 mg. I still have morning stiffness at that dose but manageable. So once I hit 10 mg again I'll try going down by 1mg instead of 2.5. It has been trial and error. My biggest one was in trying to rush getting off it.
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1 ReactionI am pretty much pain free shoulders, arms and neck.
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