Anyone have discomfort or pain when tapering off prednisone?

I wrote to my rheumatologist about taking a water pill. She totally ignored the question but told me to taper down from 7.5 mg to 5mg on alternating days. I still have considerable pain, especially in my back and hips. When I was on 10 mg my back pain was gone. Now it hurts all the time. She told me to take 1 500mg Tylenol once a day. I take 2 Tylenol arthritis pills at least once a day and they don't touch my pain. I know I need to get off prednisone but it seems like I will be in for even more pain on her new schedule. I have dry eye syndrome which I use an eye ointment for nightly. I feel like I hurt from my eyeballs to my knees! I can't stand or walk for any length of time. How do people deal with the pain and depression that comes with it?

I haven't heard of dexamethason but I will google it. I know I have to get off prednisone because of my osteoporosis. I think my dr doesn't really care that I'm in pain. I will still keep taking my Tylenol arthritis and using a heating pad.

Has anybody used dexamethason? I have stopped prednisone and doctor switched me to 2 mg once a day. I feel better but interested in any comments or info. Think I can taper off this in couple weeks. Thanks

I wrote to my rheumatologist about taking a water pill. She totally ignored the question but told me to taper down from 7.5 mg to 5mg on alternating days. I still have considerable pain, especially in my back and hips. When I was on 10 mg my back pain was gone. Now it hurts all the time. She told me to take 1 500mg Tylenol once a day. I take 2 Tylenol arthritis pills at least once a day and they don't touch my pain. I know I need to get off prednisone but it seems like I will be in for even more pain on her new schedule. I have dry eye syndrome which I use an eye ointment for nightly. I feel like I hurt from my eyeballs to my knees! I can't stand or walk for any length of time. How do people deal with the pain and depression that comes with it?

It still sounds promising since you were able to wean off it quicker. Not sure how long you took it though.

It still sounds promising since you were able to wean off it quicker. Not sure how long you took it though.

That was more will power. Knowing the damage first hand the steroid causes. I was determined to get off. I spent about 4 months in huge pain. As we all did trying to figure out whats wrong. started dex in April 2022 4mg(20mg prednisone). Fixed in 4hrs. went to 3mg day 2. Still no pain. went to 2mg day 4. some pain. I stayed on 2mg for 4 months. Then moved to 1mg. with some discomfort . I stayed at 1mg for 1 month then moved to .5mg for 2 weeks and then stopped. so about 6 months. I have had 2 flares since then. Both were easy to recognize the symptoms. I did 4mg day 1 /2mg day 2 and 3/1mg day 4 then stopped on day 5. PMR was gone. no withdrawals due to short time on steroid. I may have to experiment with flares depending on severity. However under a week I should be able to restart my cortisol.

I wrote to my rheumatologist about taking a water pill. She totally ignored the question but told me to taper down from 7.5 mg to 5mg on alternating days. I still have considerable pain, especially in my back and hips. When I was on 10 mg my back pain was gone. Now it hurts all the time. She told me to take 1 500mg Tylenol once a day. I take 2 Tylenol arthritis pills at least once a day and they don't touch my pain. I know I need to get off prednisone but it seems like I will be in for even more pain on her new schedule. I have dry eye syndrome which I use an eye ointment for nightly. I feel like I hurt from my eyeballs to my knees! I can't stand or walk for any length of time. How do people deal with the pain and depression that comes with it?

Hello @besmith57, I combined your discussion with an existing discussion titled, "Anyone have discomfort or pain when tapering off prednisone?" - https://connect.mayoclinic.org/discussion/discomfort-or-pain-when-tapering/.

I did this so you could read other members' experiences with pain after tapering off prednisone and how they coped. @monami, @milld835, @tillysam, have all shared their experiences and I invite them back to this conversation to share any updates with you.

I took DEX. for my PMR. My wife has GBM they prescribe dex for inflammation. Its how I self diagnosed myself with PMR. I was already using dex so just continued. Its about 5 times stronger than prednisone. Its the strongest corticosteroid they can administer. so 2mg of dex is 10mg of prednisone. The drug can mislead you to thinking you have reduced. be really careful. You have not done yourself any favors. It is still a steroid. It does have a more immediate effect. about 4 hrs i went from not walking to no pain. Gives you a little more of euphoria. It also has a life of 24hrs vs the 12hrs or so of prednisone. I hit the cortisol wall at 1mg.(5 prednisone). I finally tapered to .5mg. (they make a ,5 tablet but I just cut the 1 mg) I went for about 2 weeks in pain at .5 mg then just stopped. I had some pain but after about a week it resolved it.