Prednisone withdrawal and Unlikely Additional Symptoms

@kjoed53 The results of the ACTH shows my adrenals can make cortisol. Good news! I am at 2 mg scheduled to go down to 1.5 mg in about 4 days. Like you the pain presents itself stronger on one side than the other which is outside the bilateral presentation. I have tried figuring this out and can't. I want my life back.

@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?

@kjoed53
What is SMM please?
I am alsontapering prednisone, at 6mg now and having some weird symptoms, but dont know the cause.

@wendybfrompgbc
I finally got an appointment with a Rheumatologist 2+ weeks ago. Lots if blood work done. He wants me on methotrexate. After looking at side effects it looks like a scary drug with many possible side effects. He told me most people tolerate it but we'll see. He also had me go back up to 10mg of Prednisone.
Have you heard anything about nicotine patches helping autoimmune conditions?
The chronic pain is very wearing, emotionally and physically. I am also working at getting dairy our of my diet. I don't do much like kefir 1 cup,
1 T. Plain Greek yogurt to mix into making egg salad. Trying to find a substitute for milk in coffee. Ugh, everything tastes terrible
I will post more as I get into his treatment.
Thanks for any feedback I can get. This is such an isolating condition.

@emrose
SMM is smoldering multiple myeloma. What kind of weird symptoms are you having on your taper?

@kjoed53 Oh dear, sorry to hear that 😞
Ive been having severe fatigue and muscle pain. Not like PMR pain, mostly leg muscles.
Ive also had two episodes of low O2, and high heart rate, which may be unrelated. BP was higher yesterday, and inwonder if these are side effects of Rinvoq. Black box warnings are blood clots, stroke and heart attack. Really want to get off all meds.
At 6mg, and having blood work done today befire i see rheumatologist next week. So sick of it all!

@betsyhase
A possible solution for a milk substitute is oat milk. I use unsweetened original, unsweetened vanilla is also available.
Nondairy, no sugar, low calorie. I use it to make my morning instant oatmeal. I feel pretty certain you would not say "ugh" to the taste.

@betsyhase Hi Betsy. I was prescribed methotrexate and recently I quit taking it .Five years ago when I saw an internist he sent me home with 6 meds to take . You only take methotrexate one day a week and you can feel really crappy on that day so the internist said to curl up and read a book that day......He also prescribed alendronate and as I was walking out of his office hs said "if you get alendronate stuck in your throat go to emergency at the hospital right away.When I asked why he said ''if you get it stuck in your throat it can eat your esophagus."After doing some investigation I found alendronate was prescribed to prevent osteoporosis ,and further to that methotrexate can lead to osteoporosis. So you get prescribed one drug and need another to counteract the side effects of the other.I am experiencing pain so severe this week as I have quit taking my prednisone as well as I am having bone pain with knocking sounds when I turn my back.This morning it was excruciating to reach and lift my coffee cup.Had blood work last week as well as spine x-rays from neck to tailbone so will get results this coming week. It's almost a given that I will have to go back on prednisone.I feel trapped with what seems no way out of this situation Hope this hasn't scared you.I know doctors hate what they call Dr Google but each of us must research our situation and be proactive in our own care. My previous doctor who I loved said to me the first time we met was''do you know the difference between God and a doctor'' I said no and he followed by saying ''God doesn't want to be a doctor'' Oh how I miss him.You said it when you said "This is such an isolating condition".Good thing we have this forum . We are not alone . Wishing you well wendyb

@betsyhase
I'm curious to know why you are getting dairy out of your diet? Silk makes a vanilla and regular sweetened soy creamer. It's the only non dairy one that my wife likes and I can tolerate. We used it for a while but I went back to light cream because I don't use much and coffee is one of the few things I can still enjoy.

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