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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 forgot the name but I developed water around the heart. They are monitoring it??
I believe Pericarditis? I don't have that. I have Hypertrophic Obstructed Cardiomyopathy. Just don't want to try anything new that might trigger a new problem!
"Pericardial effusion is a collection of excess fluid in your pericardium, the sac around your heart."
https://my.clevelandclinic.org/health/diseases/17351-pericardial-effusion
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Pericarditis is one cause but pericardial effusion has many different causes.
I have been tapering off prednisolone and am down to 4mg . I’m having mood changes and other symptoms relating to withdrawal . I’m finding this difficult to cope with .
I’d like to hear from others about their experience and what helped ?
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1 ReactionAre you saying to eat and drink those things will increase cortisol levels?
Has your endocrinologist ever tried DHEA for your gradual
prednisone withdrawal and adrenal supplementation?
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2 ReactionsI am down to 4mg too. I did get some pains always in right hand and down right side. I used a compression glove for hand and snuggled under a quilt as the warmth seemed to ease the pain. Pains have all stopped now. I have noticed that I feel like my old self again and it does feel strange, In fact quite overwhelming. I went to the gym yesterday morning which left me feeling brilliant but later in day I was very restless, weather was really bad so a run would be a bad idea so went to the gym again. I felt better after that and very happy but did fall asleep on sofa for 2 hours. The other day when I realised my feeling were a bit up and down I told myself to do something I love but had not done for a long time. For me that was a very muddy uneven trail run with my dog, it worked and I felt back in control. It has been 10 months since I felt normal. Have a plan for when you don’t feel right, something that really makes you happy because I bet it all starts again when we are on 3mg.
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4 ReactionsThe quickest way to increase cortisol levels is to have a devastating life experience that has you on constant alert and unable to sleep. That will shoot up cortisol levels faster than most things. I don't think we're actually trying to increase cortisol so much as we're trying to reduce our body's dependence on more than we need to stay healthy. Taking prednisone makes our bodies reliant on an unnaturally high cortisone level, so we have to retrain it back to normal levels as we reduce the drug. That's my understanding.
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2 ReactionsI have been trying to describe the feeling I keep getting and you have got it in a nutshell. I keep feeling like I am on alert but in a good way and sometimes my hubby says my smile is a little like the one in the film Smile. He could be right as I keep smiling because I feel back to normal.
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1 ReactionNo ... DHEA wasn't recommended. I tried DHEA for a month on my own and stopped taking it. I didn't think DHEA was doing anything but I didn't take it very long.
My endocrinologist didn't recommend anything for secondary adrenal insufficiency because of my long term Prednisone use. Staying on 3 mg or less of Prednisone and waiting for my cortisol level to improve was the only thing I did. I was supposed to stay on 3 mg until my cortisol level improved.
I believe the only reason I could taper down to 3 mg and stay on 3 mg was because Actemra kept PMR inflammation in check. Actemra didn't suppress my adrenals and fortunately my cortisol level improved. My endocrinologist wasn't overly optimistic that my cortisol level would improve but when it did she said I could discontinue Prednisone.
What surprised me the most was that my endocrinologist said I could go from 3 mg to zero without tapering as long as my cortisol level was good. If I had symptoms of adrenal insufficiency then I could take Prednisone again. I had to go back on 60 mg of Prednisone the first time I stopped Prednisone. The 60 mg was because of a flare of uveitis that surprised me and everyone else and not because of adrenal insufficiency symptoms. My first attempt to stop Prednisone didn't go as planned.
After I got off Prednisone the second time, Actemra seems to keep PMR and uveitis in check. I don't have a rapid increase in pain but my pain levels gradually increase the longer I go without an Actemra infusion. My ESR and CRP also trend higher the longer I go without Actemra.
I don't know if I will ever be able to stop Actemra but I hope so.
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