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Still Struggling with that last mile on the path to 0 mg
After two months on 1/2mg of prednisone, various setbacks, and revisiting PT, I started to feel quite a bit of improvement, which led me to the next step.
My doctor told me to just take my remaining pills on days when I have physical therapy, which is currently three times a week. I will be at 0 mg in a little over 2 weeks,
It's only been a couple of weeks since this possibly final taper started. Last week I had a lot of pain, especially on the days after PT with no meds.
A few days ago I tried taking extra strength tylenol after an especially uncomfortable day, at 9 or 10 PM. The next morning I could still tell where the pain was, but it was muted and not especially bothersome. It took till later in the afternoon to start feeling really uncomfortable again.
I have not taken anything else in the last 2 days, and felt real improvement yesterday and this morning. At least until going food shopping this afternoon and lugging around too heavy bags.
Despite feeling general improvement, My left upper arm is stiff and difficult to lift first thing in the morning, but loosens up when I do my PT exercises. I need to stretch it periodically during the day My right arm is more likely to have surprise pains when I move, but has good range of motion all the time.
I gave up on curcumin, which seemed effective, because of loose bowel and diarrhea issues. Though I think there are other dietary triggers that contribute to the problem. I gave up on Ginger due to stomach pains.
I have other issues that may just be old injuries or osteoarthritis.
I'm hoping PT can help them too eventually. Walking and Tai Chi help everything.
Anyway, what do people think about incorporating some tylenol into my tool box on an as needed basis? I'm waiting to see if I can continue to improve without it. If I can't get through this taper I believe my doctor will want me to consult a rheumatologist in order to have access to heavier duty meds.
Anyway, I would love to hear how other people have navigated this phase .
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Similar discomfort with exercise, or PT or weather……chg in barometric pressure, humidity plus dew point at 75% or more. Off prednisone. Using Tylenol for Arthritis, 2 at bfast. My secret. This was recommended by my Rheumatologist. Good luck.
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6 ReactionsThanks for the response, that’s really good to know.
When I got down to 1 mg of prednisone, I decided to go ahead and take the dive. My pain level was not any worse after going to zero that was in July 2024. Used only over-the-counter pain meds for several months. Good days occur more often than bad days now.. I am now able to manage the pain with an occasional 12 hour Aleve. Wishing you well on your journey.
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9 ReactionsThank you. I asked my doctor how much discomfort was acceptable. He said that it was personal-some people prefer to deal with pain to avoid medication, other people don't. My PT told me that it's harder to help people who overreact to every pain. In my case it seems that I just want to grit my teeth and wait it out (while being proactive where I can).
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1 ReactionMy first time with PMR lasted 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg until I could stop taking prednisone and only have minor aches in the morning which got better as I got up and started moving around. I didn't use any over the counter stuff but probably should have thinking back on it.
I do remember feeling more pain the following morning when I overdid the exercising the previous day.
Hoping you can navigate off of the prednisone sooner than later!
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6 Reactions"When I got down to 1 mg of prednisone, I decided to go ahead and take the dive. My pain level was not any worse after going to zero that was in July 2024."
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I was the same way when an endocrinologist tried to reassure me it would be okay for me to stop taking Prednisone. There was a competing voice that said it would be okay for me to take 5 mg of prednisone for the rest of my life. I wasn't sure who to listen to but I'm extremely happy to be off Prednisone.
Instead of counting the years I took Prednisone ... now I count the years that I have been off Prednisone. I don't recall that much quality during the 12 years I was on Prednisone except for surviving all the pain. I wouldn't trade my 5 years being off Prednisone for anything. I have been able to do so much more.
The way my endocrinolgist convinced me to stop taking Prednisone was when she said nothing catastrophic was likely to happen. She also said I could restart Prednisone again for "any reason" if I felt the need. For the most part, my pain level is no worse since going to zero. I have some bad pain days where I think about taking Prednisone. I remind myself that I had bad pain days before PMR and I never took Prednisone.
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8 ReactionsI found Tylenol made me pee way too often. Some say it’s fairly innocuous but other’s disagree. I take a 1/2 a tramadol which is what they call “opioid light” It’s great for pain and I don’t use it much.
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