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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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"Endo I saw said she could not test my adrenals until I was completely off steroids which was very frustrating so I stopped going to her."
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There is some debate about this. My endocrinolgist said I had to be on a sustained low dose prednisone of 3 mg or less. I also had to be able to hold my Prednisone dose for 48 hours. Some say only holding your dose 24 hours is needed but it is better to get prednisone completely out of your system before having your cortisol level tested.
Doing any of this is hard for people with PMR/GCA to do if they aren't in remission or relapses can't be stopped. I would never have been tested until the biologic allowed me to get down to 3 mg and I was able to stay on that dose.
I was always on prednisone doses of 7 mg or more when I first saw an endocrinologist. The first time I saw an endocrinologist she said I needed to talk to my rheumatologist to see if I could get on a lower dose of prednisone and then she might be able to help me. I think she talked to my rheumatologist too because it seemed to spur my rheumatologist to try something new.
A year later, my rheumatologist asked me if I wanted to try Actemra (tocilizumab) if he could get it approved. He talked about new research about Actemra being used to treat GCA that was "promising." However, he needed to seek approval for me to try Actemra for PMR. All this happened more than 5 years ago. Now Actemra is FDA approved for GCA and Kevzara is FDA approved for PMR.
Actemra worked for me but not immediately. It took me about a year to overcome adrenal insufficiency.
This is what is happening to me too…I’m having a very hard time staying at 10 mg of Prednisone even while having weekly shots of Actemra…the pain while walking never goes away ,my knees are swelling up with the slightest of activity and I can’t seem to wake up …I’ve been a month at 10 mg and plan to go to 9 next week regardless of how I feel as it doesn’t seem to be good at 10 so may as well just suffer through and get off it. The first 3 days after Actemra shot are my best then I slide downhill until next shot …hoping the space of feeling better will lengthen .
"My rheumatologist, "my endocrinologist", LOL. Here PMR patients can't even get a referral accepted by any of the very few Rheums. Still, their waiting list is a year. No idea what it would take to see an endo! My primary refuses to believe the PMR diagnosis by my Internist husband and refused to even give me 1mg pills to help me taper. I couldn't even get methotrexate, much less Kevzara. So I muddle along with a few, very experienced, retired internists.
What is best way to increase cortisol levels then ? I’ve read caffeine,alcohol ,high fat and high sugar foods can do that …so why aren’t we encouraged in that direction (other than the obvious not good for you ) …are there other strategies one could do to increase our levels ?
I don't know of any good ways except for the lowest Prednisone dose possible. My endocrinologist said less than 3 mg was needed. This isn't possible for many people because of increasing pain or relapses of PMR if it is in remission.
Otherwise, lifestyle changes, diet chnges, better sleep, less stress and all those types of things might decrease your need for Prednisone.
Yes ... I apologize for saying that all the time. I mostly repeat what my doctors have told me in the past.
I lived very near to and worked at a large university hospital in a relatively small town in a rural state in the Midwest. I had easy access and knew many of my doctors before I saw them as a patient. My primary care doctor was my neighbor. I actually worked with my rheumatologist occasionally and she would stop and ask me how I was doing whenever we crossed paths. My ophthalmologist had kids who were on the same tennis team in high school as my kids. My doctors were more than that ... I considered them to be my friends too.
My first rheumatologist and I didn't get along very well because of how much Prednisone I was taking. I didn't seek a new rheumatologist but the one I ended up with stepped in at one of my visits. She requested that I stop taking Prednisone for a few days so she could evaluate me. There were at least 15 other rheumatologists in the rheumatology department that I could have seen.
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1 ReactionI am relating my current symptoms in this topic because I am tapering from 4 mg to 3 mg. I'm supposed to be at 3mg by Oct 1st.
Two weeks ago we went to a township meeting and sat for 3 hrs. On the way to the car, my knee buckled with sharp pain. I never sit that long. After two weeks of this intermittent buckling, pain, popping, cracking I called ortho. Got an appt yesterday with a P A. This is the same knee I injured in July falling on a concrete sidewalk. Re-xrayed yesterday. I have degenerative OA but the bones are not rubbing and I have cppd. She thinks the cppd got aggravated. From the injury? Sitting too long?, prednisone tapering, prednisone withdrawal? Treatment options are nsaids (that's a no), tylenol, injection of a steroid or hyaluronic acid, P T. Hyaluronic acid needs insurance approval so I passed on that. Went with the steroid injection because I really want to try and stop this from getting worse. I have had previous knee P T so I already have a folder with knee exercises and I have knee braces if one helps. Knee was better today. It's not both knees, not bilateral, don't think pmr, so I'm continuing the taper.
There is no way to get rid of cppd crystals unless there is fluid they can aspirate.
I still have the Achilles tendonitis, haglunds deformity and bone spur. Right foot, left knee.
I sure hope the continuing taper to 3mg and below doesn't stir up anything else.
I wish I hadn't sat for that 3 hours. One thing the P A said was that "motion is lotion". Doesn't need to be heavy exercise, just get up and move around.
I too am medically privileged as hubby is a well loved very smart, semi retired internist. Our rural community lost the one Rheum we had, otherwise I could get in tomorrow. My problem was a too looong fuse with my new PCP, never needed one before hubby retired. Now that I know who she is, I walked away. DPC is only $99/month so I chose that route. I have zero comorbidities.
Is there any way for a telemedicine program to help those who have limited access to rheumatologists. There is little physical contact at my rheumatology visits. During the pandemic I had a few phone appts. You need to be prepared with questions etc., it worked for me and they actually were very agreeable and ok with me not being in the office. I find it helpful that my specialists do excellent communication with my pcp.