Connect
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 .
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
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.
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
10 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).
-
Like -
Helpful -
Hug
2 ReactionsMy 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!
-
Like -
Helpful -
Hug
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."
------------------------------
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.
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
1 ReactionOver the weekend,, I fell and hit my chin and bit my lip. Very long story short is that I initially went to the ER, had second thoughts and went to urgent care, was told to go back to the ER, but went home, and to a planned activity. I basically felt fine. And fed up. If anything, the adrenaline from the day had me feeling better than usual.
Having been warned about possible death from brain bleeds or jaw misalignment, I spent the weekend worrying, but decided to just call my doctor today when he was back in the office.
He had me come in right away, examined me and said he could find nothing wrong. But of course to go to the hospital if I had any symptoms. I had been prescribed 500 mg Tylenol tablets by urgent care, to be taken every six hours as needed. I had only taken three of them in three days, and had not had any prednisone since the day before the incident.
My doctor told me not to take any more prednisone, but that I could take as much as 4000 mg of Tylenol a day. I have no intention of taking that much, as I don’t mind feeling where the pain is if it’s there, As long as it’s muted enough to not be bothersome.I was surprised that when the Tylenol is active, my arms do not get too stiff to move, and that I can easily get by with just one or two pills a day at this point.
The issues are still there under the surface, but I am continuing with PT and hope that being able to be more active will help things to improve to the point where more adrenaline steps in and I can get off the Tylenol too.
Assuming there are no surprise repercussions from what urgent care labeled a traumatic head injury… My doctor seemed to think that a lot of people in emergency care go overboard to protect themselves, but the NP seemed like a true believer in what she was saying, and was pretty outraged that the triage guy at the hospital did not discourage me from leaving, when I was already there.
Not the way I anticipated going off of prednisone, but I sure hope this sticks.
-
Like -
Helpful -
Hug
1 Reaction"Assuming there are no surprise repercussions from what urgent care labeled a traumatic head injury… My doctor seemed to think that a lot of people in emergency care go overboard to protect themselves."
------------------------
The final 3 mg of prednisone were probably the worst part of my taper. Ironically, PMR was well controlled and I didn't have a flare. My problems were related to adrenal insufficiency and a low cortisol level. Fortunately, I had a concerned endocrinologist in my corner. She said for me to keep her informed if "anything happened." Because of the possibility of an adrenal crisis she said I needed an "abundance of caution" to protect myself.
-
Like -
Helpful -
Hug
2 ReactionsYes, things started to get really difficult for me as soon as I got to 3 mg, and every taper has been a struggle since then. So far so good on 0 today. I just had a really challenging PT session, so I'll be really interested in seeing how my body deals with that, especially since I have another one scheduled for tomorrow.