Many of us experience problems when we are getting lower in dose and the adrenal glands are supposed to kick in and start giving us cortisole instead of Pred. Have anyone in here had a professional advise on how to help the adrenal glands to get started again? Is it possible? We should have the same plan as people with adrenal defficiency, shouldn’t we?
I read about taking a shot with salt in the morning to push them.
Hi,
This is an article written some time ago by patients (not GCA /PMR) on long term steroid medication. It may help.
My Endocrinologist just said time and taking Pred from 5mg down, in the morning. The other thing to remember is that the glands may be working fine but the other parts of the Process that induce the adrenals to work may not be working such as the pituitary gland in the brain. This is why the Synacthen test can say your glands are working but whether you end up with a fully functioning cortisol production is another matter. Cortisol keeps the sodium level raised so not sure what a shot of salt would do.
You poke at the adrenals to start working by reducing the pred dose slowly but to below the level the body needs. The only real different approach is to switch to hydrocortisone rather than pred as it has a far shorter half life than pred so the blood level falls repeatedly and pokes at the adrenals.
It isn't JUST the adrenals that are involved, the HPA axis is very complicated and lots of things have to get back to where they were before. Just because your adrenal glands are CAPABLE of producing cortisol doesn't mean the rest of the engine is functioning ideally. Having a full fuel tank won;t get the car started if the battery is dead.
As Snazzy says - salt??? If it were that simple, they'd have no problem! You have also to bear in mind that adrenal function does fall away with age and by the time we are getting off pred we are considerably older than pre-PMR. Many older people may have poor adrenal function but never realise as it is enough to cope with day-to-day problems - only in a stress situation does it lead to difficulty.
Intake in salt usually has more to do with issues in autonomic nervous system and low blood pressure related to loss of salt and fluids rather than adrenal function.
Sometimes it is part of the solution for people like me with Dysautonomia /POTS as part of the self care management of the circulation if the cause is that it isn't working from losing salt so that you don't need to go on other medications.
The doctors don't usually advise you to take in more salt though , unless circulation is affected and salt loss is the cause. And if you have high /normal or hypertensive blood pressure they usually try other methods and keep away from extra salt intake as well.
Some kidney related issues also involve more salt and even sugar intake to maintain the system functions but again , they are very specific causes and we'll monitored.
That may be were the confusion is coming from , because some people have adrenergic Dysautonomia/POTS , and it's the malfunction of the use of adrenergic reactors that is partly responsible for the condition. Then those sufferers do eat more salt or take salt tablets as well as more fluids and the right combo of inhibitor and vaso constriction or Vaso dilation drugs to control the condition.
( when they finally diagnose it fully and find the right cause of course ).
However , this is a condition that they have usually already checked for adrenal malfunction or tumours for as the cause before it is tested for and diagnosed.
There are various adrenal diets that people might try , getting advice or looking up papers and studies about the self care management that people use with primary adrenal deficiency might help in kick starting it too I suppose.
Not being fortunate to be at that point yet though I haven't looked into it thoroughly enough to be more helpful on that.
This salty shot that I meantioned was something that was recommended to take the first thing in the morning. This gives the system a boost that, as they said, made the glands relax instead of being in stress when they can't give enough cortisole. Probably something that has no proper research. My blood pressure is extremely low so considering that there is no problem taking some extra salt.
Was this salt "shot" recommended by a Doctor is it a natural health solution that has been recommended to you , or you have seen via internet research?
This makes a big difference when you are living in the " New Normal" of chronic illness instead of the realms of the " Normals" .
You have extremely low Blood Pressure , I obviously don't know to which level , in normal circumstances ( no other health issues / cause) extra salt may be an option. In your circumstances it may not be the best option for you without having some more thorough checks done on your blood pressure and other symptoms by a GP or Specialist to see if the cause is circulatory / autonomous ( when salt may be recommended ) or caused by the Adrenals ( which would require further tests and different medication ).
Basically , in our circumstances , with various condition and drug induced side effects on various systems causing sensitivities in the body , it's not generally recommended to try cures before establishing if they could do more harm than good.
I have always had really low BP so that’s a normal state for me. On higher dose of Pred I was happy to hear that it raised over 100/70. My normal is more like 90/60. So I can’t see that an extra half teaspoon of salt every morning could be an issue.
I can’t remember now where I read about this. That’s why I ask if someone else have heard about it.
Yes , it is a common natural addition to the diet of people suffering from certain types of blood pressure issues but only usually when another cause apart from loss of salt and fluids from the body has been checked out.
If the Fatigue and Low Blood Pressue is caused by something other than a loss of salt and fluids from your system then the salt intake won't be effective , and may be against medical advice for the issue that is actually causing them.
If Adrenal Function is definitely the cause , but made more extreme because you already suffer from low blood pressure ( clinical low BP is usually below 90 systolic and 60 diastolic and lower) , getting it tested properly first would still be my advice before adding salt to your diet , as extra unnecessary salt intake isn't advised to help Adrenal Function .
Our kidney function is already slightly weaker for various reasons from disease activity and the effect of Pred on the kidneys , bladder and tubes connecting them.
That , in itself , may make it advisable to consult the GP and have checks done on your kidney and circulatory function ( a urine sodium test at the least ) just to ensure it will do no harm.
But obviously , now you have done your research , it is your personal choice to try salt or not without getting your GPs opinion.
If you were talking a shot of whiskey you might be on to something.
But I doubt a shot of salt is going to do anything except maybe raise your blood pressure, which probably is not the best thing.
Other than one effect of poor adrenal function is low BP - but I agree, somehow I think it needs rather more than that!
I was advised by my Endocrinologist to take 25 mgs of Hydrocortisone decreasing quite rapidly by 5 mgs at a time, after being diagnosed with mild Adrenal deficiency, this meant coming straight off 5 mgs of Prednisalone. My Rheumatologist favoured Avery slow taper alternating 4.5 mgs and 5 mgs for 6 weeks, then 4.5 mgs ( Prednisalone) for 6 weeks, then alternating 4 mgs and 4.5 mgs for 6 weeks and so on. I am trying the latter.
I just had a synacthen test, I came down from 5.mg to 3.5 quite quickly (1/4mg per fortnight) to have the test and really felt exhausted in the mornings even after a good nights sleep, until my Pred kicked in fully at around 11:00 am. my Endo said that I had an 'encouraging but sub optimal cortisol response' and to continue to reduce at 1/2mg per month. I am now down to 3mg and am starting to feel more energetic in the mornings so i suspect my adrenals are coming on line but taking their time. I am also very very hungry at around 11;30 am every day and have to eat an early lunch. After that I feel pretty good, I suspect that that is all part of the cortisol and adrenals being topped up by the pred. and waking up later than me. This means that I do all my energetic stuff late afternoon and evening. As I have said before I am naturally an night owl so this might be my natural cycle but just made more extreme because I take pred. I think patience is required by the adrenals, they will not be rushed.
Does anyone has experience with supplementation with DHEA?
I'm sure it was discussed some time ago. I'm also sure I found some work that suggested it wasn't a good idea!
This
webmd.com/vitamins/ai/ingre...
points out that it may not improve the effect of being on steroids.
The Mayo is really not impressed and say clearly to AVOID:
To the salt comments: I just started taking a medicine that I ordered from India it’s called Bio Combination 19 and it’s been helping me a lot. I think it has a lot of the tissue salts that are supposed to occur in our bodies naturally. I take it with my 5mg prednisone daily and I’ve felt a huge difference with my overall body pain, throat pain, jaw pain, knee pain etc. something to look into. I’ll probably do a separate post on this if it helps me wean off my pred even more.
Having looked it up I am quite confused: one source says it is homeopathic and another says "SBL Bio-Combination 19 Tablet is an all-around adjusted blend of powerful bio-chemic salts". It can't be both.
I think I would be very reticent about purchasing something like this on the internet - you have no idea what you are putting in your body.
It was recommended to me by a homeopathy doctor and I have family in India who were visiting so they brought it back. From my understanding it is used in conjunction with homeopathic therapies. I dunno I’ve been taking it for two weeks and my pain is literally cut in half. When I get a chance to talk to the homeopathy doctor I’ll ask for more clarification.
India is second in the counterfeit pharmaceutical list. Only bested by China.
Hi
I have heard about a product named Drenamin. There are 2 varieties; one is for immune support and one is for adrenal support. I read a review that said they couldn’t imagine anyone tapering without this kind of support. I have not ordered it but I’m giving it some thought. I am going to investigate their claims; let’s face it- somethings that are supposed to help, just plainly don’t. Maybe some people have tried it and we will hear what they think.
I haven't tried it and as a vegetarian I never will.🤣🤣🤣 It contains cow liver, pig glands etc all the lovely bits they sweep off the abatoir floor. As one commentator asked a a website a I looked at previously (being at 6mg)) -are the animal grass fed and hormone free,? I presume the one has similar products in it. This livestrong link might be a good starting point. Thanks for flagging this version of self claimed adrenal support up. Obvs not going to be a veggie version. 🤓🐮
reuters.com/article/us-heal...
Being of a naturally sceptical nature, I think this probably sums up my opinion of such supplements. They are not subject to the same controls that pharmaceutical drugs are and when purchased online you have even less real assurance as to what will arrive. And health supplements can have side effects too - which are rarely listed on the websites.
livestrong.com/article/3348...
Snap!
Agree re willy-nilly gobbling of supplements from obscure sources. I stick to those from recognized manufacturers, after scouring all my sources for both supportive and contradictory information. I check my pharmacist for validation of what I find.
PMRPro, Thanks for the info link, you are a bottomless source of wisdom!
💜💜💜 carry on...💃🏼
recovering adrenals.
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