If you have tapering problems below 5 mg this might explain why.
https://www.nadf.us/secondary-adrenal-insufficiency.html
----------------------
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. "
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I started seeing a new rheumatologist yesterday who I thought was great, and she wants me to start alternate day tapering (I am currently at 5). She feels it is a way to “trick” the adrenals into getting busy again. She didn’t object to .5 mg increments which I have been doing, just thought this is a better plan.
Thank you so much. That was helpful. I noticed that you mentioned an endocrinologist? Not a rheumatologist? My rheumatologist is the absolute pits.
How do they measure your Cortisol? A blood test??
The first time I attempted this taper I alternated 4 and 3 for 2 weeks and then just 4 for two weeks before alternating 4 and 3 for 2 weeks.
I could never get rid of the pain in the back of my upper legs and going up steps got extremely difficult.
I had started at 5mg feeling good, started alternating 5 and 4 and followed the plan the rheum gave me.
I started taking Tylenol for pain, obviously took too much because my ALT/AST liver enzymes elevated so I quit the Tylenol, stopped tapering and increased my prednisone a little.
I'm at 4 mg and starting to feel the leg pain but Dr does not think it is pmr. I had a consult appt with a 2nd rheum who ordered PT for gait/stability, gluteus medius tendinopathy and lower extremity weakness. I start PT in 2 weeks, am staying at 4 mg til then.
I have an Achilles problem which compromises my walking, just got foot orthotics.
I also have a BP problem. It's complicated. In a nutshell my low number at times is too low, in the 40's. I'm seeing my cardiologist next week.
What’s BP?
Blood Pressure
I have hypertension
Ah! I am learning. Are you watching your diet??
Prednisone interacts with blood levels of cortisol so lab values that measure cortisol levels are meaningless unless your Prednisone dose is very low. An endocrinologist said there was nothing she could do unless I could maintain a 3 mg dose of Prednisone for an extended period of time without having to increase my dose.
I have read that some endocrinologists won't even consider checking a cortisol level unless you can be off Prednisone for a couple of days. My endocrinologist said 48 hours so that was when a morning 8 a.m. cortisol level was done. First I had to be able to stay on 3 mg of Prednisone. Second I couldn't take any Prednisone for 48 hours.
Time of day is critical because cortisol levels are variable throughout the day. A "morning 8 a.m. cortisol level" was done because cortisol levels are highest in the morning.
https://www.webmd.com/a-to-z-guides/cortisol-test
-------------------
There are other factors that need to be considered in order to correctly interpret cortisol levels. Since cortisol is the stress hormone even your level of stress needs to be considered. Not every doctor is qualified to interpret cortisol levels but an endocrinologist is your best bet. Correctly interpreting cortisol levels is an art because of all the factors that need to be considered. It is not a simple thing to do. The lab is a simple blood draw but interpreting the results is difficult.
My rheumatologist did a screening 8 a.m. cortisol level before referring me to an endocrinologist. An endocrinologist rechecked and verified my level but wasn't at all surprised that it was so low because I was on Prednisone for more than 12 years. The endocrinologist took over for my rheumatologist and gave me instructions about my Prednisone dose with the hope of getting me off Prednisone eventually.
There is an adrenal stimulating test called the Synacthen test that is more complicated. My endocrinologist didn't think it was needed unless I was completely off Prednisone and still symptomatic. My endocrinologist felt that a Synacthen test might decide if I needed to go back on Prednisone but it wouldn't be helpful in terms of getting me off Prednisone.
https://pathologytestsexplained.org.au/ptests-pro.php?q=Synacthen+short+test
-----------------------------
There weren't any promises made that I would be able to get off prednisone. There was some back and forth between the endocrinologist and rheumatologist to make sure I didn't need Prednisone for the treatment of my autoimmune conditions. Even my ophthalmologist got involved because I had a flare of uveitis after my first attempt to taper off Prednisone. I had to go back up to 60 mg of Prednisone after my first attempt to discontinue Prednisone.
There was a learning curve involved that took about 2 years for my doctors to find a way to get me off Prednisone. Much of it involved trying 2 different biologics to figure out what worked best for me.
Ultimately, my rheumatologist said it would be impossible to "optimally" treat all my autoimmune conditions. This was after my endocrinologist determined my cortisol level was "adequate." That was when I was given a choice between only one biologic or stay on Prednisone. I chose Actemra because it worked best for me compared to the other options. I have no regrets about the decision I made.
As best as I can, I'm following a diet plan incorporating low fat, anti-inflammation, and Meniere's/ vestibular migraine diets.
No caffeine, chocolate, alcohol, low/ no added salt is important.
"No caffeine, chocolate, alcohol, or low/ no added salt is important."
This would be a deal breaker for me. I will stick with doing the best I can.
Well, 2 years ago I started having what has been diagnosed as Meniere's/ vestibular migraine episodes. They are debilitating. Been in the ER twice. I have not been able to pinpoint all the triggers. Am not risking having one of these episodes if it can be avoided.