Making our own cortisone
Posted , 11 users are following.
Is there an article i can print off for my Dr to read about the blood test to see if our body is capable of making cortisone. Now im not at all sure i have that right but im sure some kind person on here will put me right. Is it the ACTH Stimulation test which seems rather involved. I am down to 1.5mg but reluctant to go any further as i have a few issues which the physio is working on 1. I have bursitus (not sure u spell it like that) in my hip. 2. I have pain in my neck but she is concentrating on my shoulder, she thinks there maybe inflammation there so i am having a blood test on thursday. She thinks i should put the dosage up but i really really dont want to if i have this test it might put my mind at rest. I feel fine except for these 2 issues. I did put the dosage up to 7 a while back but it didnt make any difference ive also had a cortisone injection which didnt make any difference nor did the Bowen Therapy. Looking forward to hearing your comments.
1 like, 7 replies
lilian05079 liz12234
Posted
Hi liz2223
Our adrenals secrete cortisol naturally, but when taking steroids our adrenals become suppressed and do not secrete as much cortisol because the steroid becomes the synthetic cortisol. When you get to very low levels your natural cortisol starts to return because your adrenals are not being suppressed so much..but the adrenals do secrete a small amount of cortisol whilst on preds...i had bursitis when i came off preds and had a cortisone shot which worked for me...i was also asked to go back on preds but i refused. If you don't want to up the dose and you feel happy about that then that is your choice. The only thing you can do is google what you want to know. Then print it off if you find what your looking for....best wishes liz2223...
Anhaga liz12234
Posted
https://patient.info/health/synacthen-test
I think if you were having problems with your adrenals you'd have some very definite and serious symptoms by now, at 1 or 2 mg. I think fatigue comes with the territory, that's what I've found anyway, but gradually it's been improving.
reggie92967 liz12234
Posted
Wow I'm confused, never heard about the cortisone problem. Could someone explain it better, & SED was mentioned too. My PCP is doubting my PMR diagnosis, always has. I was diagnosed by a Rhuematologist 3.5-yrs. ago after tests, labs, & a 10- day trial of 10mg. of prednisone that made me feel like Superman. That didn't last long so the increases started, thus, all the terrible side-effects, 45-pounds later, blown up like a balloon, emotionally a mess, we started to decrease. It was way up, then way down for a long time. I'm so distressed due to the inconsistency between the Rhuematologist & my PCP, I respect & trust both of them. They're both very empathetic, & give wonderful care. Today I reconnected with a long lost friend who brought up cfids, chronic fatigue immunosuppressive...? Now hearing about it & researching it today it sounds like maybe that'd fit my symptoms better ? My SED rate fluctuates, but usually shows no inflamation, but it has been up to 60, does that happen ? I have overall body pain throbbing, pulsating, like a tooth ache, sometimes down my legs, other times up & down my arms, shoulders, wrist, much stiffness, & the worst are the bouts of horrible fatigue. Been on 10mg. for many months & when go below 8 or 9 I get really bad. It seems like my symptoms are coming back on 10, & worsening, I refuse to go above 10mg. Think many of these PMR diagnosis are mis-diagnosis, & we may have something else ? Thanks to all of you, I appreciate all replies.
ptolemy reggie92967
Posted
I am sorry you are having such a bad time. The steroids produce cortisol so the adrenal glands which normally perform this function decide to take a holiday. The body needs about 7.5mg of cortisol a day so if you take less steroids than that the adrenal glands have to start doing a bit of work. If you have been taking steroids for more than a couple of weeks or particularly at a high dose your body will be awash with cortisol manufactured by the steroids while your adrenal glands will be lying back doing nothing. When you get down to around 7.5mg they are suddenly forced into action which can be a bit of a shock that it is time for them to go back to work. This can make us very tired. Some people find that their adrenal glands are unable to fully function. There is a test for this if it is thought this may be the case.
EileenH reggie92967
Posted
If you refuse to go above 10mg to see if it deals with your symptoms there is not much anyone can say or do in terms of diagnosis. If it is PMR you need to start with a high enough dose to eliminate the accumulated inflammation - and then you reduce to find the lowest dose that gives the same result. If you don't do that to start with then you are always working from a very high baseline and the slightest variation in the disease activity will cause a return of symptoms. And without doing that - you cannot say it isn't PMR. The other things you mention will not respond to pred - that is one characteristic of PMR. There are other things that would also respond some to PMR.
But in PMR either you take enough pred to manage the symptoms - or it isn't worth it. Taking too little means you still have all the symptoms so no benefits to balance out the downsides. Weight gain CAN be dealt with - many people have avoided weight gain and even lost considerable amounts of pred weight - but you have to do your part in that and be disciplined about diet, preferably a low carb approach.
There probably are people with the diagnosis who don't have PMR - but anyone whose symptoms fit and they respond well and reasonably fast to 15-20mg/day of pred almost certainly DOES. When it needs much more or the response is poor - then questions must be asked. If they don't respond at all to the recommended dose of pred then it probably is NOT PMR. If you do not have raised inflammatory markers that doesn't rule out a dx of PMR - but raised inflammatory markers does rule out several things.
nick67069 liz12234
Posted
As far as your pain in hip and neck area, I would look for proper diagnosis. It probably is not related to PMR, since it did not respond to increased dose of pred.
EileenH liz12234
Posted
I think you may be misunderstanding the role of the ACTH stimulation test - if you have got to 1.5mg with no other problems than something a physio can work on it is very unlikely you need the test. Below about 7,5mg pred you body has to make corticol for your body to function well. If it weren't doing so you would almost certainly have suffered other problems by now, above all overwhelming fatigue. If you have increasing inflammation you need more pred to deal with it - that is a very different thing.