Prednisone withdrawal and Unlikely Additional Symptoms

@brerabbit At 81 also my second time around so I understand your annoyance. We have better things to do with our time.

I have had pmr for 5 years and my last 2 CRP tests have been normal yet I am in agony and I was down to 3mgs a day and I quit taking it 4 days ago as it makes no difference to my pain level. I am at my wits end with the pain and the fatigue. I have been trying to taper of a number of drugs as up until January I was taking 640 pills ever 4 weeks. I got my pill amount to 540 pills every 4 weeks since January. I have coronary artery disease and have had a serious heart attack and have 5 stents in my heart to add to the mix.. I am very short of breath so I am starting to think it will never end.Unfortunately I have no faith or trust in my doctor for numerous reasons and am on a registry to get a new doctor which is over three years long and I might be dead by then.

Hello @wendybfrompgbc, So sorry to hear that you are 5 years into your PMR without and still having agonizing pain. Hoping you can get a new doctor or rheumatologist that will work with you on a treatment plan. While you wait for others to respond, I thought you might like to scan through other discussions and comments from members who have posted about having normal CRP test but still having pain. Here's a search link that lists the discussions and comments - https://connect.mayoclinic.org/search/.

You mentioned being on a lot of different pills. Have you ever had a review of all of the medications you are taking to see if there may be some interactions between the different medications? Also wondering if some of the medications are alternatives to help the prednisone?

Sounds like perhaps your adrenal glands have not yet kicked in to manufacture enough natural cortisol, which, alas, seems to be part of the tapering experience at low doses. As I understand the process, when on prednisone your body stops making cortisol because the prednisone takes its place and the body can take months before it decides to get back to work. Hence the fatigue. I am certainly not a doctor but you might look into that. A biologic like Kevzara might help but that takes 4 to 6 months to kick in and is expensive unless insurance covers it.

I have been treating my PMR for 1 year 9 months now. 4 months ago, I was at 5 mg daily and then had a flare up and gradually went up to 10 mgs in 3 months. Then I started tapering down and when I was at 7 mg, I started feeling pain in my right upper arm and left knee. The left leg was so painful, I had to walk with a cane. I'd take my prednisone and it would get better but only lasted until late afternoon. Then my doctor told me to go to 10 mgs and that didn't help so I went to 15 mg. I saw my Rheumatologist and he is having me stay on 15 mg and taper down 2.5 mg every 4 weeks until I'm at 5 mg. My diet is ok but I'm starting to really cut out gluten more. I need to get this PMR under control. I don't want to have to start Actemra infusions. Such a battle.

@brandon03291957
Did your pain go away on 15mg or did it just dull it? Is it possible that you have two different issues, with the PMR responding to prednisone but the other not so much?

@betsyhase Hi Betsy I am in the same situation as you . I am 74 years old and have been on Prednisone for 5 years ,soon to be 6 years and can identify with your situation. I have lost so much with this disease , have also been in pain 24/7 and and lost strength to the point I have to sit in my chair very often while doing simple household chores.I feel like a prisoner in my own home.My balance is so bad I have had several falls which required an ambulance trip to the hospital. Had lab work done 3 days ago and my CRP test was normal .I found out you can have a normal CRP level and still have PMR. I am looking for a new doctor and am on a wait list to get one.The wait list is over 3 years long. I am looking for alternatives for treatment and hope to find some.I am not giving up ever.The only thing I haven't lost with this disease is the weight I have gained which doesn't help the situation

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

@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.

@wendybfrompgbc dealing with pmr and prednisone and then deal with jerks. I hope you are able to get in with another provider.