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.
I have a pill cutter that I used. It takes some practice and takes time but you can cut down the 1 mg pills. Once I hit 10 mg I tapered by 1. Once I hit 7 I tapered by .5 and then once I hit 5 I tapered by .25 . I did it this way because I got really close at the two year mark to getting off and had a big flare and then it took awhile before I was ready to try and start retapering. So I decided to go super slow and hope that tiny reductions would work.
Congratulations - it is a Big Milestone - so celebrate, celebrate, celebrate.
I was not pain free when I took my last steroid, but over a period of 4-6 months with gentle exercise and some Tylenol I was about 95% pain free. Don't know that I will ever be pain free due to my age. My pains now are not PMR pains, so I guess I feel more normal.
I have a pill cutter that I used. It takes some practice and takes time but you can cut down the 1 mg pills. Once I hit 10 mg I tapered by 1. Once I hit 7 I tapered by .5 and then once I hit 5 I tapered by .25 . I did it this way because I got really close at the two year mark to getting off and had a big flare and then it took awhile before I was ready to try and start retapering. So I decided to go super slow and hope that tiny reductions would work.
Thank you @susan63 that helps. I have a pill cutter as well but perhaps I need to look at getting a different one. Mine is super finicky and cutting a 5mg pill in half is already a challenge. I read that liquid prednisone is an option. I wonder if that would be easier dosage wise.
Does anyone have any experience with liquid prednisone?
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 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.
Thank you @susan63 that helps. I have a pill cutter as well but perhaps I need to look at getting a different one. Mine is super finicky and cutting a 5mg pill in half is already a challenge. I read that liquid prednisone is an option. I wonder if that would be easier dosage wise.
Does anyone have any experience with liquid prednisone?
I’m at 3 mg, trying to get down 1 mg a month. I’m pretty resolved that I will end up with some pain that maybe is PMR and maybe is just old age in the mornings? But it’s good to hear that we can deal with a little pain, right. Good luck to us all.
I’m at 3 mg, trying to get down 1 mg a month. I’m pretty resolved that I will end up with some pain that maybe is PMR and maybe is just old age in the mornings? But it’s good to hear that we can deal with a little pain, right. Good luck to us all.
The notion that people should be "pain free" if you are on the right dose of Prednisone is a recipe for being on Prednisone forever. Pain is a fact of life and we all need to be able to deal with "some pain."
It used to drive me crazy when people were told to increase their Prednisone dose for "niggles of pain" or even to increase their dose to prevent "tolerable pain" from getting worse. There is a threshold that Prednisone should be increased but I don't think "niggles of pain" and "tolerable pain" meets that threshold.
Very helpful feedback. I am down to 6mg started in June 5months ago at 15. I have started taking a Tylenol just one a day which seems to help a lot. Has anyone tried Tylenol Arthritis? Is it ok with Prednisone? Just started back in at the gym gently. Physical activity helps a lot and I push gently through the pain to maintain good range of motion. Male age 65.
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I have a pill cutter that I used. It takes some practice and takes time but you can cut down the 1 mg pills. Once I hit 10 mg I tapered by 1. Once I hit 7 I tapered by .5 and then once I hit 5 I tapered by .25 . I did it this way because I got really close at the two year mark to getting off and had a big flare and then it took awhile before I was ready to try and start retapering. So I decided to go super slow and hope that tiny reductions would work.
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7 ReactionsCongratulations - it is a Big Milestone - so celebrate, celebrate, celebrate.
I was not pain free when I took my last steroid, but over a period of 4-6 months with gentle exercise and some Tylenol I was about 95% pain free. Don't know that I will ever be pain free due to my age. My pains now are not PMR pains, so I guess I feel more normal.
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Hug
7 ReactionsThank you @susan63 that helps. I have a pill cutter as well but perhaps I need to look at getting a different one. Mine is super finicky and cutting a 5mg pill in half is already a challenge. I read that liquid prednisone is an option. I wonder if that would be easier dosage wise.
Does anyone have any experience with liquid prednisone?
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Hug
1 ReactionSo happy for you! I hope I get there soon!
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3 ReactionsBuy a pill splitter. I am also decreasing by 1/4 mg every two weeks or more. Down to 1mg.
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4 ReactionsThank you. I do have one but it crushes rather than cuts. I'll have to get a better one. How wonderful that you are down to 1 mg, Best wishes!
I asked my doctor for 1mg and 2.5mg to make my life easier.
Happy to say that since starting at 20mg in December, I'm down to 3.5 for the last week.
I hope to be off by December, reducing slowly by 0.5mg every 10 days or so. Yes, I have some pain, but nothing a couple of Tylenol can't handle.
Good luck to us all!
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4 ReactionsI’m at 3 mg, trying to get down 1 mg a month. I’m pretty resolved that I will end up with some pain that maybe is PMR and maybe is just old age in the mornings? But it’s good to hear that we can deal with a little pain, right. Good luck to us all.
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Like -
Helpful -
Hug
8 ReactionsThe notion that people should be "pain free" if you are on the right dose of Prednisone is a recipe for being on Prednisone forever. Pain is a fact of life and we all need to be able to deal with "some pain."
It used to drive me crazy when people were told to increase their Prednisone dose for "niggles of pain" or even to increase their dose to prevent "tolerable pain" from getting worse. There is a threshold that Prednisone should be increased but I don't think "niggles of pain" and "tolerable pain" meets that threshold.
Just my opinion for what it is worth!
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Helpful -
Hug
8 ReactionsVery helpful feedback. I am down to 6mg started in June 5months ago at 15. I have started taking a Tylenol just one a day which seems to help a lot. Has anyone tried Tylenol Arthritis? Is it ok with Prednisone? Just started back in at the gym gently. Physical activity helps a lot and I push gently through the pain to maintain good range of motion. Male age 65.