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Prednisone withdrawal and Unlikely Additional Symptoms
I am down to 2 mg of prednisone. Really struggling. On Day 10 of 10 at 2 mg. Tomorrow alternating 1 mg 2 mg for 10 days. Fatigue so significant after sitting down after few minutes. Pmr seems controlled. No stiffness, fuctional and range of motion intact. Problem fatigue, pain increasing and additional issues pain in hips. Wasn't part of original issue that was shoulder arms. Difficult swelling feels like lump in throat. X-ray revealed metal hernia. Am I making these symptoms up. Oh, dizziness is new and brain fog uptick.
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@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.
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1 ReactionI find the tapering of prednisone so illogical. Normally you would suspect that a slow reduction would allow your body to recover. We start at large doses, mine was 60mg in Oct 2025 for unconfirmed GCA, and then gradually get down to the 7.5mg, 5mg or 3mg doses and all hell breaks loose??? Weird symptoms of leg cramps, stiff neck, leg pain, shoulders stiff....but is this PMR or prednisone withdrawal?? Sometimes we push trough and it gets better, sometimes we up our dose out of fear that PMR is active again. I am presently at 1.5 mg and suppose to go to 1mg today but I have been running a low grade temp for the last 10 days. That was one of my first symptoms of GCA. I don't think prednisone withdrawal can cause a fever? I am in such a dilemma. I know if I consult my Rheumatologist, she would safely increase my dose.....but I am so close to being off. Anyone experience a relapse with a fever being a symptom? I appreciate any ideas.....I know 7 months on prednisone is nothing compared to most postings, but as you know.....the sooner off the better.
Thanks for any input.
Betty
@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.
@bettsgca It is very much illogical. The more I try to understand it. I am at 2mg scheduled to go down to 1.5mg. However, the pain is increasing but I do not want to go back up. I don't know if irrational but I don't want to have GCA polymyalgia rheumatica is enough
@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
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5 Reactions@dswilson913
Why does it get hard at this stage? I feel your "pain" - not really as my pain is minor compared to the postings I have read. I feel fortunate when I compare all the problems people are having. I have a rheumatologist and have since I was diagnosed. I don't understand having to be on a waiting list.....is that in another country? I send messages to my doctor and she always responds quickly. I count my blessings.
How long have you been on 2mg? I have extended my step downs from every 3 weeks to 4 weeks now. Pain kicks in about week 2 on a step down, then usually week 3 things straighten out- but not this time. Keep me posted on how you are doing......sending you hope that you can continue tapering and not go up.
@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?
@brandon03291957 I'm curious why you are resistant to starting a biologic. I know I'm not alone in saying that it really helped me in tapering the prednisone.
Also, if the pain is not bilateral, you should definitely consider PT. I put up with pain in one shoulder for months before I finally figured that out. PT straightened me out within a matter of a week or so.
@bettsgca Thank you. I too have a wonderful Rheumatologist. My functionality and Range of motion have always been in intact even the pain was in the background. However, from the beginning it has been the prednisolone and taper. Fatigue, brain fog, etc. Surprisingly I have gotten better sleep for decades. I have been at 2 mg for about 6 days. I have not notified my Rheumatologist yet, but have decided to change the number of days from 5 to 10. My Rheumatologist listened to me as the emotional downsize taking toll and we agreed on the faster table. Good luck on your journey.
@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.
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