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Prednisone withdrawal and Unlikely Additional Symptoms
Polymyalgia Rheumatica (PMR) | Last Active: 1 hour ago | Replies (64)Comment receiving replies
I was diagnosed with PMR and started taking prednisone January 23, 2026. After 2 months extreme pain ADLs compromised and 6 doctors finally got diagnosis. I was told taking prednisone would confirm along with my elevated CPR abd Seds. No one told me how horrible and the side affects were and when asked very dismissive. I started off on 40 mg. Yes, it controlled and gave me relief for the worst of pain. However the mental, emotional, brain fog, forgetfulness were off the charts. I am 70 and yes a lot of those symptoms come with age. Additionally, it resonated with me when you said had to sit down doing some tasks. I have significant fatigue. If there is good news I have maintained functionality and range of motion.
I am on a fast taper because of mental health issues. I am down to 2 mg. However it is interesting my left shoulder arm is in significant pain but the right is minimal. There may be a mechanical issue. I have a ultrasound scheduled next month. I absolutely hate this medication. I don't know if people have gotten off prednisone in 6 months. It is double edged sword...@wendybfrompgbc
Replies to "I was diagnosed with PMR and started taking prednisone January 23, 2026. After 2 months extreme..."
@dswilson913
I started on 15mg prednisone in February because blood work showed inflammation. It did very little. After more extensive blood work I was diagnosed with PMR and increased to 25mg prednisone. It took all the hip girdle pain away but only most of the shoulder and neck pain. I was okay with that and started a slow taper in April, down to 22.5mg. Before my next taper I was also diagnosed with SMM. I'm on a faster taper now because of that. I'm doing 2.5mg decreases every 10 days as long as my hip girdle pain doesn't return. I will change to 1mg decrease at 10mg and 0.5mg decrease at 5. My shoulders ache a little more for a few days but it subsides by day 7. I'm down to 15mg now. My left shoulder hurts more than my right one and has from the beginning. When my hips were hurting my left one also hurt more. I'm sure there's a reason but I don't know why. I'm more fatigued on the taper. Do you know if your adrenal glands have woken up yet? If not are hydrocortisone pills an option?
@dswilson913
I feel your pain.
This is a scary medical condition and getting the correct diagnosis and treatment is a challenge. I am still in the early stages of diagnosis and scrambling to understand and doing what is best to treat this condition. Having to rely on drugs is not how I want to live but hopefully I can minimize it eventually.
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@dswilson913 I have been trying to get off prednisone since 5 months after I started taking it and that is over 5 years ago.When I told my internist at the time I was quitting Prednisone he said he and my GP had been talking and were considering committing me.The result of that would be forcing me to take it.I walked out of the internist's office and never went back.Then I went to my GP's office in a rage and told him if he ever pulled a stunt like that I would be out of his office so fast my under wear would have to take the next bus You see I have a history of mental health issues and I feel that has been used against me for years. I have had 2 biopsies one on each temple to see if I giant cell arteritis. I was happy to find the first test was negative and the Internet said to me and I quote what he said to me '' well in my expert opinion you do have giant cell arteritis The second biopsy confirmed it too was negative. My treatment has been absolutely horrendous and I am the over 3 year wait list.I still have my GP but try to avoid him as much as I can. I need a new doctor in the worst way.