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If you have tapering problems below 5 mg this might explain why.
https://www.nadf.us/secondary-adrenal-insufficiency.html
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The following explains the challenges we need to overcome. I believe this is exactly what happened to me.
"The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness.
The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that an individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids.
In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission. "
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I'm very envious that you're able to run. I had to give it up for the time being because the prednisone has made my muscles strain very easily. After having several strains in a short time I became concerned about doing permanent damage. I'm currently at 10 mg, and I'm hoping that the muscle problems will clear up as I taper more or else get off of prednisone. I'm a few months behind you on the taper. I'm interested to hear how you're taper is going. It sounds like your adrenal glands are slowly waking back up.
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1 ReactionPred and PMR do mess with your muscles. I did start weight training with 1kilo weights about a month after the start of this and it was hard work but over time I got stronger. For legs I used the stair master at the gym, I hated it at first and could only manage 5 minutes hanging on for dear life but again over time I got used to it and can do a couple of hours now and my legs thanked me for it. Esp my knees. I hope you are walking lots.
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1 Reactiontiateacake:
Hoping for your sake that your current taper below 5 of 1 per month is not too fast. Below 5 is of course the critical period in which your adrenals must start producing. Be alert for symptoms of insufficiency.
My schedule has been 1 per month from 10 to 5, but now at 0.5 per month, presently at 1….no issues. Good luck.
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8 ReactionsI will see how next week goes and will up by 0.5 if needed. Will defo taper by 0.5 after 3mg.
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1 ReactionThanks. I have GCA and PMR, so I have taken a lot of prednisone over the last 7 months. I was running, lifting weights, walking and stretching before I got sick, so I was pretty fit coming into it. Other than not being able to run the only thing I can't do now is pushups due to weakness and tightness in my chest muscles.
That's great you can do 2 hours on the stair master. I am walking quite a bit. I do about 70 minutes every day, and some days I do another session of 40-50 minutes. Occasionally I hike for 2 to 2 and half hours. Plus I do weight lifting and stretching sessions every other day like I've done for the past 35 years or so. I saw my rheumatologist today, and he thought my muscles should improve as the prednisone dose goes down.
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1 ReactionAs someone who has been down this road successfully (tapering off pred) I thought I should share my experience. I would say that let your body tell you how fast to go. Stay as close to pain free as you can get. If you drop down and you have new pain, then it was too big a drop and/or too soon. There is no harm (unless you also have gluacoma like I do) in taking your time. The Dr may have different plans but you call the shots. You're the one going through this. One size does not fit all.
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6 ReactionsYou do what you want, but decreasing that quickly is likely to cause a major relapse. I’m in my 7th year and just managed to go to 3.5 ml without pain. I accept I may be on Pred at low dose for life which is not the end of the world. Sure beats what you’re fixing to go through. My opinion only.
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1 ReactionHello @tiateacake,
I combined your discussion with an existing discussion titled:
"If you have tapering problems below 5 mg this might explain why."
- https://connect.mayoclinic.org/discussion/if-you-have-tapering-problems-below-5-mg-this-might-explain-why/.
@dadcue, @nancy334, @jeff97, and @art43 all shared some of their experiences in this discussion and it may be worth going back to read some of the things they've learned. Here, members can also see your experience as well.
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1 Reaction"The Dr may have different plans but you call the shots. You're the one going through this."
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I started out feeling like this. There wasn't much anyone could tell me about tapering off prednisone. I battled other autoimmune disorders for 20 years before PMR was diagnosed. I successfully tapered off prednisone countless times for a variety of conditions until PMR was diagnosed. PMR was the first time I was referred to a rheumatologist. I decided many years earlier that there wasn't anything a rheumatologist could help me with.
My ophthalmologist prescribed massive amounts of prednisone for uveitis which can also cause vision loss. I self medicated with prednisone for a variety of other painful conditions. I never needed to take prednisone on a "long term" basis. My ophthalmologist said I was skilled with prednisone tapers to treat uveitis. He had no idea that I was taking Prednisone for other things.
My first rheumatologist and I started out in conflict. She thought I had inflammatory arthritis because I was diagnosed with it 20 years earlier. She called me "noncompliant" and that made me even more resistive to her recommendations. I had treated myself for 20 years so I didn't think there was anything I didn't already know.
Fortunately, a second rheumatologist intervened. She said we needed to work together. She listened intently to my symptoms and diagnosed me with PMR. That changed everything because I didn't know anything about PMR. Twelve years later I was still being treated with Prednisone for PMR by the same rheumatologist. I listened to her. I had to concede that she knew more than me about PMR because when I started out, I didn't know anything.
You need someone in your corner to do battle with PMR. I consider my rheumatiologist to be my coach in my battle with PMR. She wasn't my adversary.
If every year of PMR represents one round ... I did 15 rounds with PMR. I didn't win every round but I now feel like I'm winning the battle. I felt like I was taking a beating for 15 years until my rheumatiologist helped me find a way to taper off Prednisone. I give my coach and rheumatologist all the credit from getting me off Prednisone because I was ready to concede. There was much more involved than tapering slowly off Prednisone.
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3 ReactionsI have tried to get below 3 for over 2 years now and suffer every day....it has affected not only my body but my mind. Unable to do anything. Today I took it upon myself to go to 5 mg. of Prednisone instead of 3 . It might not be enough but I will give it a couple of days more before increasing if needed. This isn't living when you can't function on a daily basis.
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