Long term (12yrs) steroid user (Betamethasone now and Prednisolone at the start) for Asthma. I have Steroid induced Type-2 diabetes and high blood pressure amongst other things. Adrenals are unresponsive to the injected 'infusion' test.
I've been advised by the chest consultant at my local general that i'm never getting off steroids.
Is that really it for me, or is there a way off this steroid roller coaster? I have tried reducing from where i'm currently at, 1mg Betamethasone, for a long time but life is rubbish once the withdrawls kick in so 1mg is where life is at.
Any thoughts?
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ThatsMeStuffed
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This is the forum for people suffering with PMR/GCA issues and although we have knowledge of using steroids and adrenal function for that condition you may get advice that is more relevant to your needs on one of the Asthma or Diabetic forums.
The choices for improving your Adrenal health may be different for those affected by your conditions or with the different drugs involved in treating you.
Just try joining and posting the same questions as you posted on here on a number of those different forums and hopefully you will get the answers you are looking for.
I thought my post was clear at the end asking about getting off steroids, i mentioned all the other stuff as i felt it was relevant but it ended up being confusing instead.
I've been on Asthma forums and there is very little on the subject hence why i came here. You all seem fairly well clued up on steroids, the long term effects, and how to get off them.
Because you have a number of health issues which differ to those that are mainly discussed here you may get more relevant information about how your adrenal recovery would be from people with more experience of it with the illnesses you mentioned, even if you suffer from PMR or GCA too.
Adrenal recovery can be quite different and the symptoms and side effects experienced can be different too depending on the type of steroids you were on , for how long , and which illnesses you had as well.
Look at the links I sent, and maybe type adrenal insufficiency into search box - that should bring up more posts.
Fortunately most PMR/GCA patients don’t seem to suffer from A/I -probably because steroids in our conditions is used in a slightly different way to asthmatic patients.
The only way to tickle the adrenal function into life is to be at a lower dose of pred than the body requires so the HPA axis (hypothalamus, pituitary, adrenal) feedback loops start up again to trigger the production of cortisol. After 12 years the chances of that happening are low - and if it does, it could take much longer than most doctors expect. Even if you are able to get off steroids entirely it is thought to take at least a year for adrenal function to return to normal and function reliably. So you could need to be at well under the equivalent of 5mg pred for months to get a result.
But 1mg betamethasone is equivalent to about 8mg methyl pred or 10mg prednisone/prednisolone - there won't be an adrenal response at that level of steroid, you have to get lower than that before they start to wake up, it is what is called a physiological dose, about the same as the body needs so the body doesn't produce any cortisol. I
If they were to switch you to 10mg prednisolone and THEN you tapered slowly, 1mg at a time, you would have a better chance of the adrenal function returning. Even better would be hydrocortisone, 40mg split into 2 or 3 doses over the day, and reducing that slowly. It is excreted from the body quicker so there is more time in the body with no pred present. Betamethasone is a long acting corticosteroid, its effect after a single dose lasts more than 24 hours, the body is never without the effect on once daily dosing.
And because your current dose is relatively high at 10mg pred, you cannot just stop taking it, no wonder you feel awful if you try it, you are going into adrenal insufficiency and even risking an adrenal crisis.
I came off Pred because it wasn't working very well for me even at high doses of 40mg daily so went onto Betamethasone. It does take a 2 to 3 days to feel the withdrawl, thereafter it goes downhill very quickly. I once lasted a couple of weeks on 0.5mg but it was a huge struggle to function meaningfully, i really struggled.
In the absence of any medical breakthrough in this field anytime soon, and the unlikelyhood of being abducted by aliens and being repaired, it sounds like that's basically it for me.
You do have to reduce the dose VERY slowly from here - and that is really the underlying problem. You are a long way from the point your adrenal function will show signs of life and if you can't manage with one of the short-acting CS, then it isn't likely to happen. That's the trouble with the long acting ones - terribly difficult to reduce the dose.
But if you NEED that much CS to manage symptoms - that's what you need. Do you have many problems with it?
I've had all kinds of issues with steroids, the side effects are horrendous and will be with me forever. You'd think after almost 12yrs i'd be used to the side effects, alas not. Status quo for me is same shit, different day. 👍
I have been very lucky I suppose - I have had side effects, but nothing with the form of prednisone I use now (Lodotra) that I can't live with. Methyl pred was pretty horrendous.
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