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Adrenal suppression and coming off cortisone
Just over 6 months ago my son was diagnosed with adrenal suppression, probably due to large doses of steroid inhalers for his asthma. They put him on cortisone tablets 3 times a day and I was amazed with the improvement in his energy levels.
Now the consultant wants us to reduce this to 2 times a day and I am a little worried. On the odd occation that we have forgotten to give him is tablet he's crashed around 2pm and got back to his old tired and lethargic self. After a month we are to do a blood spot cortisol test and wait for the results.
My questions are...
1) Will his body gradually improve day by day during this month of reduced cortisole or if he can't manage for 1 day on just the 2 tablets am I setting him up for a fall?
2) If after a month he is still not coping with the reduced dose how long should we wait before we try again.
After 5 years of a tired child I don't want to go back again.
Any suggestions or information greatully recieved.
vicki
Now the consultant wants us to reduce this to 2 times a day and I am a little worried. On the odd occation that we have forgotten to give him is tablet he's crashed around 2pm and got back to his old tired and lethargic self. After a month we are to do a blood spot cortisol test and wait for the results.
My questions are...
1) Will his body gradually improve day by day during this month of reduced cortisole or if he can't manage for 1 day on just the 2 tablets am I setting him up for a fall?
2) If after a month he is still not coping with the reduced dose how long should we wait before we try again.
After 5 years of a tired child I don't want to go back again.
Any suggestions or information greatully recieved.
vicki
I DO NOT agree. I HATE hydrocortisone....its hard to get off and small doses are not at less risk because your body will eventually become tolerant to the dose and you will always need to increase...those further shutting down your own adrenals...I've heard what my doctors say...BUT I know what I feel and felt...I feel horrible and have more side affects since they increased my dose...don't ever go on any steroid unless you are dying. Thats my advice.
1 Comments
TammyJean-I agree with you a 1,000% !!!!
My son had HC tablets daily and extra when he was ill. In addition to this he had an injection for emergencies.
My local doctors surgery showed me how to do the injection and let me practise which was invaluable.
Have they tested is daily production of cortisone? Using a blood spot cortisone test. Or done a short synacthen test? They would give you the information as to his daily cortisone production and production in times of stress. Then you'd know if he needed tablets daily or just when very ill/injured.
If in doubt speak to your consultant and ask them to explain more fully. I left our appointment reeling but fully informed.
After 18 months my son is now off all tablets and we've just had a short synacthen test to see if I can stop carrying the injection. Results in 3 weeks. Gradual weaning off the tablets really worked, after an initial few bad days.
Good luck.
My local doctors surgery showed me how to do the injection and let me practise which was invaluable.
Have they tested is daily production of cortisone? Using a blood spot cortisone test. Or done a short synacthen test? They would give you the information as to his daily cortisone production and production in times of stress. Then you'd know if he needed tablets daily or just when very ill/injured.
If in doubt speak to your consultant and ask them to explain more fully. I left our appointment reeling but fully informed.
After 18 months my son is now off all tablets and we've just had a short synacthen test to see if I can stop carrying the injection. Results in 3 weeks. Gradual weaning off the tablets really worked, after an initial few bad days.
Good luck.
I guess he is going to need an emergency injection kit with him!!! since they told him he only needs to take HC when he is unwell--he is likely to have a problem really easily and need that shot!!!
I hate it when docs just do not give us need to know info!!!!!
I hate it when docs just do not give us need to know info!!!!!
I just posted under the "monthly question" what I have in my kit - so that can give you some details about what I carry around. The shot is IM - intra-muscular so you have to give it in the thigh or butt. Make sure you get a ACT-O-VIAL when you get the script as the medication is not stable - it therefore comes in powder. The act-o-vial has the powder in one part, the liquid saline in another, and you press it and it breaks the seal and they mix. Otherwise you need two vials and have to draw up the liquid, put in the powder, mix, then re-draw.
For an IM shot, select your area (try to avoid any obvious blood vessels) and run with alchol prep. Then pinch up a good amount around where you are going to put in the needle (this makes it hurt less) to make it firm and stick the needle in, expel the medication evenly, and withdraw.
Ask your PCP to show you - or if you are friendly with your local EMTs - I suggest going to them. I also suggest getting a medic alert bracelet, and letting the EMTs know about the shot. MOST states prohibit the EMTs from giving the shot (which is stupid since it is needed for life saving) but most will ask you if you want help etc. It just depends on the person.
I know by the time I need it, I cannot give it to myself! I have printed instructions for my hubster - but I have a feeling he won't do it...eek.
So I carry anti-vomiting pills and extra meds to try not to get to that point.
I am not sure what the glucogel is - never heard of it... I have to look that one up - is he diabetic?
BTW - find another doctor, if he is AI, he needs replacements ALL THE TIME, not just when he is sick. He also needs testing to know if he needs other medications like fludrocortisone. Get copies of his testing - and make sure they are done at the right time - usually 8am fasting, and the ACTH has to be in a chilled tube and spun immediately. Or it degrades and the results are low just from lab handling.
For an IM shot, select your area (try to avoid any obvious blood vessels) and run with alchol prep. Then pinch up a good amount around where you are going to put in the needle (this makes it hurt less) to make it firm and stick the needle in, expel the medication evenly, and withdraw.
Ask your PCP to show you - or if you are friendly with your local EMTs - I suggest going to them. I also suggest getting a medic alert bracelet, and letting the EMTs know about the shot. MOST states prohibit the EMTs from giving the shot (which is stupid since it is needed for life saving) but most will ask you if you want help etc. It just depends on the person.
I know by the time I need it, I cannot give it to myself! I have printed instructions for my hubster - but I have a feeling he won't do it...eek.
So I carry anti-vomiting pills and extra meds to try not to get to that point.
I am not sure what the glucogel is - never heard of it... I have to look that one up - is he diabetic?
BTW - find another doctor, if he is AI, he needs replacements ALL THE TIME, not just when he is sick. He also needs testing to know if he needs other medications like fludrocortisone. Get copies of his testing - and make sure they are done at the right time - usually 8am fasting, and the ACTH has to be in a chilled tube and spun immediately. Or it degrades and the results are low just from lab handling.
my son has been on a high dose of inhaled steroids for his asthma for about8 years now and he has now been told he has adrenal insuffiancy. and been told he has to take hydrocortisone tablets when he is unwell and carry a emergency injection kit around with him. i so worried about him and dont realy understand what to do and ive not been shown how to use the injection if ever i need it . he also has been given glucogel .
I have an extremely irritable bladder also. I can't tell you how many times I peed in a cup before I learned a neat trick that stops me from having to pee constantly. I drink a teaspoon of baking soda in a glass of water and it usually takes care of the problem. It is NASTY to drink--but alot better than peeing all day. I have to be careful about what I eat--anything too acidic sets my bladder off. I've got family here--and just had my armpit cut open---an infection that hurt like heck and was really swollen-----I had MRSA a couple of years ago, so infections make me nervous. She didn't get much of anything out of it, except some waxy stuff---so who knows whta is going on---but I'll get back to you----I've got more to talk to you about.
He does have reflux! As well as irritable bladder which he is on oxybutin for and some kind of constipation (despite going daily) which he is on Senna for. Along with the food allergies (wheat, dairy and soya) it makes for an interesting life. 2 days on less omeprazole and so far so good.
He usually has oat milk which is fine and its been so long now that he's been off dairy it doesn't bother us. Almost 5 years.
We will try the reduced dose of HC in a couple of weeks once SAT's are out the way and we know how he's going with the reduced omeprazole. The last 2 times he came off omprazole he lost a lot of weight so I am keeping an eye on that. No idea why it happens as he eats loads. Mainly fruit and veg and the dietician did say he needed a few more high calorie foods such as milky puddings and custard etc (made with oat milk obviously) We shall see.
Thanks for all your advice, knowledge is power and all that :)
vicki
He usually has oat milk which is fine and its been so long now that he's been off dairy it doesn't bother us. Almost 5 years.
We will try the reduced dose of HC in a couple of weeks once SAT's are out the way and we know how he's going with the reduced omeprazole. The last 2 times he came off omprazole he lost a lot of weight so I am keeping an eye on that. No idea why it happens as he eats loads. Mainly fruit and veg and the dietician did say he needed a few more high calorie foods such as milky puddings and custard etc (made with oat milk obviously) We shall see.
Thanks for all your advice, knowledge is power and all that :)
vicki
I really had my arthritis flare and my atopic dermatitis flare when i started weaning of steroids---but i was on hydrocortisone. however, the flares did get better within a few weeks---but now that I am completely off of Hydrocortisone (and thyroid) I have rashes again and alot of trouble with my arthritis---and i take a prescription anti-inflammatory.
A physiological dose of steroids will not cause all of the problems that a high dose of steroids will---so if your son should happen to continue to need a small amount of steroids--don't worry about it--it should not cause side effects because it is only replacing what your body would normally be making on it's own. I had worried about my immune system--and even been warned by my family doc about being on HC--but my neighbor, also a doctor, explained it to me correctly---that the small dose is not a problem.
Does your son also have reflux---you said his pediatrician is reducing his omeprizole? If his iron levels are normal and also his ferritin levels are normal, then i wouldn't worry about him going off of the iron supplement---it will help relieve constipation if the iron is causing any--which will also help with reflux---if that is why he is on omeprizole.
I definitely agree about not putting your son back on soy. Besides rice milk, there is also almond milk and coconut milk---all three of them are good.
A physiological dose of steroids will not cause all of the problems that a high dose of steroids will---so if your son should happen to continue to need a small amount of steroids--don't worry about it--it should not cause side effects because it is only replacing what your body would normally be making on it's own. I had worried about my immune system--and even been warned by my family doc about being on HC--but my neighbor, also a doctor, explained it to me correctly---that the small dose is not a problem.
Does your son also have reflux---you said his pediatrician is reducing his omeprizole? If his iron levels are normal and also his ferritin levels are normal, then i wouldn't worry about him going off of the iron supplement---it will help relieve constipation if the iron is causing any--which will also help with reflux---if that is why he is on omeprizole.
I definitely agree about not putting your son back on soy. Besides rice milk, there is also almond milk and coconut milk---all three of them are good.
Hi,
I appreciate the stress you are under.
I was on steroids for 18 mths and have the following comments.
1. It seems your son is taking prednisone. I was on that but didn't feel great and swapped to hydrocortisone which in my case inflicted less side effects.
2. I cannot recall the ratio of hydrocortisone to prednisone but the former comes in many size doses including 1 mg so that tapering off should be straight forward. No cutting of pills needed.
3. Tapering must be done slowly.
4. When in the day one takes hydrocortisone is not important, the quantity taken in total in a day is important. I was told to take most of the drug in the AM and the balance at lunchtime. I played around with the doses and found that 3 smaller doses between 8 am and 4 pm worked best for me.
As rumpled points out you don't want to take too many steroids too late in the day or sleep will be disturbed.
5. You mention he is on soya. Why? Non-fermented soy (e.g. soy milk and tofu) is high in phytoestrogens which can definitely mess with hormones in both men and women.
And it's best not to mess with hormones especially when you're trying to correct a hormonal imbalance.
Does he have an allergy to milk? If so may I suggest rice milk instead of soy. It works for me.
Just a few thoughts.
I appreciate the stress you are under.
I was on steroids for 18 mths and have the following comments.
1. It seems your son is taking prednisone. I was on that but didn't feel great and swapped to hydrocortisone which in my case inflicted less side effects.
2. I cannot recall the ratio of hydrocortisone to prednisone but the former comes in many size doses including 1 mg so that tapering off should be straight forward. No cutting of pills needed.
3. Tapering must be done slowly.
4. When in the day one takes hydrocortisone is not important, the quantity taken in total in a day is important. I was told to take most of the drug in the AM and the balance at lunchtime. I played around with the doses and found that 3 smaller doses between 8 am and 4 pm worked best for me.
As rumpled points out you don't want to take too many steroids too late in the day or sleep will be disturbed.
5. You mention he is on soya. Why? Non-fermented soy (e.g. soy milk and tofu) is high in phytoestrogens which can definitely mess with hormones in both men and women.
And it's best not to mess with hormones especially when you're trying to correct a hormonal imbalance.
Does he have an allergy to milk? If so may I suggest rice milk instead of soy. It works for me.
Just a few thoughts.
It is really a good idea to get a copy of any and all testing as well as imaging if it is done that way you don't rely on the docs to tell you what is ok and what is not, as they uh, are not always straight with you. I cannot tell you how many times I was told I was okay and I got my tests and found out the opposite.
The premise of AI is that the body cannot hold sodium. That is the that cause of a crisis - in most, sodium crashes and potassium spikes (in some, like me, both crash) so craving salt or low sodium is a hallmark of Addison's or AI. After activity or sweating, I usually have tomato juice or pickles to replace sodium.
It seems a lot of us have low iron, low D etc. - not sure why but I have the same.
Does he have a medic alert bracelet (or something) and an emergency kit? By emergency kit I mean injectable act-o-vial of solu-cortef and needle with alcohol pads, instructions, contact list, and in mine I also have extra meds and zofran (anti-nausea meds) as throwing up is a medical emergency so avoiding that is something you want to prevent as much as possible. Read up on what a crisis is so you can identify and prevent it, and if you cannot prevent, learn to treat or know when to take to the ER.
The premise of AI is that the body cannot hold sodium. That is the that cause of a crisis - in most, sodium crashes and potassium spikes (in some, like me, both crash) so craving salt or low sodium is a hallmark of Addison's or AI. After activity or sweating, I usually have tomato juice or pickles to replace sodium.
It seems a lot of us have low iron, low D etc. - not sure why but I have the same.
Does he have a medic alert bracelet (or something) and an emergency kit? By emergency kit I mean injectable act-o-vial of solu-cortef and needle with alcohol pads, instructions, contact list, and in mine I also have extra meds and zofran (anti-nausea meds) as throwing up is a medical emergency so avoiding that is something you want to prevent as much as possible. Read up on what a crisis is so you can identify and prevent it, and if you cannot prevent, learn to treat or know when to take to the ER.
He eats everything and anything! He has a tremendous appetite and isn't picky (which is good seeing as he's allergic to wheat, dairy and soya!) He's had loads of blood tests but so far no-one has mentioned his sodium or potassium levels so I assume they are normal. His iron is often low which is why he's been on an iron supplement for so long (just come off it). What is the theory behind craving salt?
I knew about the cortisol levels being highest in the morning (his was 60 on his test when it should be above 120) but hadn't put that information together so yes, you are right, missing the evening one is a better idea.
Thanks
Vicki
I knew about the cortisol levels being highest in the morning (his was 60 on his test when it should be above 120) but hadn't put that information together so yes, you are right, missing the evening one is a better idea.
Thanks
Vicki
That is decent. BTW in a normal person, cortisol is highest in the morning (peaks) and falls throughout the day (lab ranges follow this pattern) - so when a person replaces, normally one avoids taking a dose later in the afternoon and evening so as to avoid both side hidden effects and not to interfere with sleep. So missing the afternoon dose is very reasonable and should help him sleep as well.
Does he crave salt? How are his potassium and sodium readings?
Does he crave salt? How are his potassium and sodium readings?
Result, I spoke the the endocrinologist who was concerned that he is still syptomatic when he misses a dose. He's going to stop the final dose of the day as that won't affect him too much at school and we're going to push the midday one a little later. After 2-4 weeks we'll do a bloodspot cortisol test and go from there. Hopefully this will be more managed than missing the midday one and spending every afternoon in an exhausted state.
Happy days.
Happy days.
He's on 2.5mg 3 times a day so not sure I can split the tablets as they are so small, I'd rather split than miss though. He's only been on the cortisone for 6 months and he's right in the middle of sats. Helpfully his paediatrician also wants to reduce his omeprazole, re-introduce soya and stop his iron supplement all at the same time. On top of this he's just increased his bladder meds - all feels a little out of control for my liking. I just want him to be well and lead a full and happy life - he's 7 after all and had so much to deal with already.:(
I'm going to phone the endocrinologist and see what he says.
vicki
I'm going to phone the endocrinologist and see what he says.
vicki
"Were you on it? If so how did you mange withdrawal."
I started to taper, but my doctor, seeing the bad effect it had on me. told me to stop cold. I did and started improving. No withdrawal that I could spot
I started to taper, but my doctor, seeing the bad effect it had on me. told me to stop cold. I did and started improving. No withdrawal that I could spot
Your son should gradually improve. Please keep in mind that high dose steroids should not be long term due to the long term health effects and while he may have energy it is not real, it is artificial and comes at a cost. The cost can be bones, muscle, eye issues etc.
Tapering should be done slowly and if needed, go up and down a bit to help work your way down.
Tapering should be done slowly and if needed, go up and down a bit to help work your way down.
One way to help with the taper might be to split the two pills into three doses. Say if he is now going to take 20 mg a day...divide this into 10, 5, 5 for example. Hope this helps
He is no longer on steroids for his asthma, he uses montelukast to manage his symptoms, which have improved anyway. But the cortisone is what keeps him going. Were you on it? If so how did you mange withdrawal.
Regards
Vicki
Regards
Vicki
I got off steroids altogether as it was destroying my health. Not only was it affecting my adrenals, it gave me systemic candidiasis. Instead of steroids I now take natural anti-inflammatories. I am better off than I was before and there are no side effects.
Steroids destroy the immune system, cause osteoporosis, affect growth, play havoc with the adrenals and foster the overgrowth of Candida albicans. From my own experience I know there are safe and effective alternatives.
Steroids destroy the immune system, cause osteoporosis, affect growth, play havoc with the adrenals and foster the overgrowth of Candida albicans. From my own experience I know there are safe and effective alternatives.
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