Between a rock and a hard place

[Crochetgardener]

Good morning, My GP sent me to a endocrinologist due to adrenal insufficiency which was diagnosed after a fasting blood test. I have a lot of hip and leg pain on my current 5mg but the endocrinologist wants me off steroids asap. So down to 4.5 mg in four weeks, then to 4 mg after that , at which point more blood tests. I have to now wear a medic alert bracelet due to steroid dependency and a scared by the severity of what could happen if I get Sick, break a bone or vomit. This has all left me wondering how to proceed. Any else in a similar position please.

[SheffieldJane]

Not yet. I am at 6 mgs of Pred and feeling deathly fatigue. I am under a well respected Rheumatologist. When I get down to 5 mgs my Endocrinologist wants me to go in and be tested for the ability to produce my own Cortisol.I suspect, that I will find myself in your position, like others who have gone before. Caught between the conflicting priorities of two specialists. This was beginning to happen about 3 years ago when I failed a Synacthen test at 5 mgs, at the tail end of PMR treatment. I tapered to 3 mgs and passed a subsequent morning cortisol test.

I was shortly thereafter diagnosed with non cranial GCA/LVV so my Pred was put up to 40 mgs. My Endocrinologist had been proposing a switch to Hydrocortisone to stimulate my own Cortisol production. I expect this will be his approach this time. He supplied me with an emergency hydrocortisone injection kit in case of an Adrenal crisis. This was then all halted. It is difficult to ascertain whether our disease is inactive and hydrocortisone does not seem to be very effective in dealing with the pain of inflammation. The endocrinologist’s priority will be to stimulate the Adrenals into recovery. I too seek a solution to this issue. It would be interesting to hear how you get on.

[PMRpro Ambassador]

If you were on 5mg pred then of course you apparently have adrenal insufficiency - 5mg is still plenty to suppress cortisol production. And 5mg pred is normally a replacement dose for patients with adrenal insufficiency.

Are you under a rheumy for the PMR? At present you are in the middle of a power struggle over managing PMR (I assume you have PMR, there is no info in your bio on your profile, please tell us your history, it helps us so much) amd dealing with secondary adrenal insufficiency,

There is a parallel thread you might find relevant and interesting as it develops:

healthunlocked.com/pmrgcauk...

where I have said:

"If the PMR is still active then HC doesn't manage it as well as pred because its duration of action is shorter. It means taking doses 3x daily - far less convenient. It is still a corticosteroid so has similar potential adverse effects and for some people they are worse than they experienced with pred - just like people have different side effects even with different brands of pred never mind prednisone or prednisolone. These are all major factor in the compliance of patients in taking their pred.

In addition, the company producing HC for the UK suddenly increased the price dramatically (like 3000% I think) so pred was being used for a while as it was so much cheaper.

A recent study found that pred does just as good a job as HC with no increased risks in secondary adrenal insufficiency (less positive for primary adrenal insufficiency)."

The endocrinological aspects must be balanced with the rheumatological aspects - it isn't easy. But in context, there is no real consensus that you MUST stop the pred and switch to HC just because at present your adrenal function is suppressed. You need the two consultants to talk to each other. I appreciate that is less likely - except maybe in somewhere like Leeds where Prof Mackie does research with her endocrinology colleagues!

[Crochetgardener in reply to PMRpro]

Thanks for the reply, haven’t got a rheumatologist, in fact have never seen a doctor , it was all diagnosed over the phone last Sep. Don’t really know why I was sent to the endocrinologist but not sure I will be able to meet his target of 4mg to retest . It is all such a mystery. Have signed a consent for ambulance service to keep my details in the event that I have to call them and given info. On sick day rules. Too much to take in really. I think I have added details to my profile. Thanks again

[PMRpro Ambassador in reply to Crochetgardener]

Hmmmm - sounds like a total mess based on lack of thought and awareness of the whole story. And this "diagnosed over the phone and never been seen by a doctor" is getting not only silly but downright dangerous. Your GP has a level of awareness that is enough for them to get halfway on autopilot but that isn't ideal and now they are sending you into a cul-de-sac that may make things a bit complicated.

The whole ambo service and sick day rules side is good - apart from having scared you to death. Lord only knows how most people have survived PMR and getting off pred in the past!

Where are you?

[Crochetgardener in reply to PMRpro]

I am in Norfolk

[PMRpro Ambassador in reply to Crochetgardener]

You could swop your appt with the enthusiastic endo with Longtimer!!! OTOH - if you want a PMR rheumy, Max Yates at the N&N comes highly recommended!

[Crochetgardener in reply to PMRpro]

Sorry , don’t understand the initials, OTOH. Plus how do I even get a referral for the rheumatologist, ?

[PMRpro Ambassador in reply to Crochetgardener]

On the other hand ...

Tell your GP you would like to be referred to Dr Max Yates (no-one else) at the N&N

[piglette]

Sounds like some tick off list your doctor has read. Patient gets to low dose check adrenal glands - tick!! If you have a lot of pain at 5mg you may be at too low a dose of pred. I would have thought it more important that you get the PMR under control at this point rather than finding out if your adrenal glands could work, as the steroids are currently supporting you anyway. Also you do not seem to have had any of the adrenal symptoms from what you say, lucky you! Most people have a steroid card, mobile alert, bracelet or necklace from the time they start steroids. When you say you have hip pain is it just one hip or both? Also you say you are worried about broken bones, have you had a Dexascan?

[Crochetgardener in reply to piglette]

Thanks Piglette, no scan . The endocrinologists says steroids can cause heart attack, stroke, diabetes and osteoporosis and for this reason getting off them completely is the goal. It seems to me that everyone has a different pathway with the medics. I do have incredible fatigue as well as the discomfort. Both hips and down my legs from about 4.00 am. Eases around midday but that’s when the tiredness kicks in . Ah well . Hope you stay well

[PMRpro Ambassador in reply to Crochetgardener]

So can PMR and GCA. And that pain says to me that your PMR is alive and kicking. Unmanaged PMR leads to a lot of pain and disability which leads to weight gain, loss of bone density and a lot of misery - I know, I had it for 5 years. There is no need for them to cause diabetes - cutting carbs drastically seems to have protected me for over 13 years. I haven't had a heart attack yet. And my bone density at the last dexascan was not very different from the start -and that is without bisphosphonates, just calcium supplements for a time and now dietary and vit D.

[piglette in reply to Crochetgardener]

I despair, in that case why don’t they just ban steroids if they are so disastrous?? The reason is they are a wonder drug. I think your endocrinologist could find a lot of other drugs which are much more lethal if he looked, I wonder if he could find a drug without side effects on the other hand, probably not. It sounds very much to me as if you should be on steroids and probably forget the adrenals for the time being until you get down to a lower dose or you are going to be in a lot of unecessary pain.

[DorsetLady PMRGCAuk volunteer in reply to Crochetgardener]

They can/and do also save sight…think your Endo needs a reality check…