Adrenal Insufficiency ?

[MarksPoint]

Hi everyone, I'm wondering if anyone else has felt like this after finishing Prednisolone.

I think I did a 'faster than I should have' taper, but my blood test when down to 1mg back in Dec showed Cortisol level at 260 (range is 145 to 600).

I am injecting Actemra fortnightly and will do until the end of this year.... according to Rheumo.

I took my last dose of Pred end of Dec and since then have felt pretty rotten....very sleepy, and with glutes and thigh muscle aches and nausea on exertion - exertion being just walking 20 paces !!

The nausea seems to have left me a week ago, but I'm still very tired. Last week's Cortisol blood test was 250 and ACTH was 3.3, my GP felt this was ok...sort of.

The last thing I want to do is go back on Pred as I hated the side effects....I've already lost half my hair for the 2nd time in 3 years, but if needs must ?

With my Cortisol blood levels looking low but, in the range, do you think I can stay as I am and persevere? Has anyone else been through the same withdrawal symptoms after stopping Pred and if so, what did you end up doing.....sticking it out or going back onto low dose Pred?

Thanks for reading. xxx

[SheffieldJane]

Have your blood sugars been tested recently?

My guess is your Adrenal system is struggling a bit . Do you see an Endocrinologist, they might be able to advise ? I think this end bit is tricky to read.

[MarksPoint in reply to SheffieldJane]

Blood sugars were ok a few weeks ago....I really do think its struggling Adrenals. Since the nausea went away I feel as though I can cope another few weeks feeling like this because at least I can eat now ! Although 80% of my taste buds have been 'killed' by the Pred, I really struggle to find food that I actually like !! This is such a challenge eh?

[SnazzyD]

A cortisol of around 260 sure didn’t have me feeling like a spring lamb. My adrenal journey was long and rocky even without your fast reduction. One thing I did find was that even if my levels were ok one day, it didn’t mean my adrenal axis was able to pay out consistently. Even your GP thought it was only “ok….sort of”. That’s the problem, it needs to be good all day every day to feel well. Your hair falling out may be due to this and any other physical struggle that is going on. Hair is a good barometer of systemic upset, not necessarily Pred and often not the Pred. Mine fell out 5 months after diagnosis and again during adrenal insufficiency. Until my adrenal glands were ok, it was often dry and scraggy, the Pred had nothing to do with it.

Even when my Synacthen test showed a good result at 1.5mg Pred, I couldn’t rely on my adrenal axis to be functioning for say, a busy day out. This went on for 18 months after I stopped Pred having taken a year to get from 1mg to zero.

The way I dealt with it was reduce very very slowly. Under 5mg it was 0.5mg over 8-14 weeks just to cope with life without collapsing. That’s the issue with waiting for the adrenal axis to come back to 100%; you tread the line between challenging your body to produce more cortisol and crashing. Like a controlled fall. It is not a time to decide that Pred is all bad and throw caution to the wind in my view.

What side effects were you getting with Pred? If you reduced quickly I wonder if you were still getting side effects of higher doses (I found there’s a lag after reducing) but blaming the lower doses because time wasn’t given for it all to level out. You may find a low dose of Pred is ok. By that I mean 3mg or so.

Regards your taste and fatigue, just a thought, but did you have Covid or a decent virus in the last 6 months? That can cause muscle pain too, though it might be argued that you do need some Pred because Actemra doesn’t necessarily deal with your PMR 100%. This is because it is only deals with one inflammatory mediator Interleukin-6 and if your PMR has more involved, you might need the help of the generalist, Pred more than you’d like.

It’s a choice of how you want to live your life and how much you want to play chicken with adrenal crisis. Your symptoms, if they are adrenal insufficiency, sound a bit close to the edge to me. Whatever you do don’t go out without Pred in your pocket and wear a medic alert bracelet/necklace for at least a year after your last Pred.

[MarksPoint in reply to SnazzyD]

Thankyou sooo much for all your experience and advice. I feel that you are right in everything you have said and I must consider going back on low dose Pred and see how I feel then. Maybe I'm panicking because of the amount of Pred I took ...2,500mg over a 4 month period, the first time I took 8,500 mg over a 12 month period. I guess if I go back on 5 mg a day that's only 150mg /month which works out to be so much less than when I had to take the large doses for those first few months.

Pred previously changed my taste buds, hair fell out, some days of nausea, but the worst effects were when I stopped taking it ...really painful joints and ligaments etc. But, I know I can't go on much longer feeling this way, even though the nausea has just about gone I feel extremely tired for half the day and mentally it's all making me feel rather depressed, though I have never suffered from depression in my life.

I will keep you posted and thankyou again for all your help. x

[SnazzyD in reply to MarksPoint]

This is for sure a life changing illness and we all go through that mourning of not being able to function as we did. When we try and crash and burn it just adds to the spiral. You do improve but it is so slow and the killer is we don’t have an end point to psyche ourselves up for. Low cortisol function is dreadful for feeling anxious, low or depressed so pushing to zero too fast is going to feel grim.

The early stages are scary because of the pots of Pred we have to chuck down but getting fixated on accumulated dose is not helpful. Low dose is associated with few problems and some rheumatologists keep people on low doses either long term or permanently because it avoids yo-yo’ ing and having to go back to higher doses than otherwise be taken. A poor quality of life is also not a good exchange for dosing on principle, something that eludes a lot of doctors too.

You could take 5mg and settle into that to see if your symptoms improve, but you must avoid over doing activities and expectation. At this stage your autoimmune symptoms take precedence over adrenal ‘training’. Then try 0.5mg drops monthly at a minimum. We usually say, the lower the slower. Your doctor needs to know what has happened and what you want to do if you find this helps you cope.

[MarksPoint in reply to SnazzyD]

Your words of wisdom are such a help Snazzy, I can't thank you enough, and everyone on this site who understand completely what life is like living with these diseases, and the drugs we have to take. I feel so alone, and I am so alone since my wonderful other half died last year after 53 years together, but even if I had kids or relatives, I wouldn't want to burden them with my 'issues', its not fair on them. It is a lonely disease that's for sure.

I can't talk to my Rheumo until next Tuesday so last night I decided to start 5mg Pred daily and hope that's enough to make me feel like I am in the land of the living once again ! And yes, I will learn to pace myself and embrace myself for managing to get here, rather than do a Thelma and Louise which I have felt like this last few weeks...I can smile about that now.

And again, thankyou for being there.

[DorsetLady PMRGCAuk volunteer in reply to MarksPoint]

It is a lonely disease, and even if you did talk to others who haven’t been through our illnesses they simply wouldn’t understand the complexities of it… which is why we always say -talk to us - we do understand.

We may not be able to give you all the answers you want but we do know what you are going through, and even though we may be on the other side of the world we can help - by listening, empathising and most of all understanding.

And good idea to take the Pred… if it’s helping you, it’s the right thing to do. All the best 😊

[MarksPoint in reply to DorsetLady]

I agree with everything you say and thankyou for saying such "words of wisdom".

I started on 5mg 2 days ago and have felt so much better, no nausea or tiredness, though I have to say I just woke up this morning and felt the nausea again. Chances are I might need to go higher but I will see how I go for a few days before changing dose. Thanks again. x

[PMRpro Ambassador in reply to MarksPoint]

Did you do more because of feeling better?

[MarksPoint in reply to PMRpro]

After taking 5mg all the unpleasant symptoms of nausea, tiredness and lack of motivation disappeared completely within a few hours of taking them. I am into my 5th day of 5mg and still feeling good though each morning when I wake up, I realize I need to take the 5mg asap otherwise sneaky feelings of nausea start up.

[DorsetLady PMRGCAuk volunteer]

Would agree it’s adrenals still struggling - and it’s a well known fact they may not be back to full function for up to a year after finishing Pred.  SnazzyD who did suffer afterward has replied , so please do take notice of what she has said.

[cmToddy]

After pred I had to take Hydrocortisone Tablets due to cortisone level which was 34. I started with them last May. My last test was 303 nearer normal level. I don’t think 250 is that low but if you feel like I did, you could try them. Good Luck.

[piglette in reply to cmToddy]

Hydrocortisone is also a steroid and people are sometimes given it when they get to a low level of pred. It is just a replacement for pred. Are you still taking them?

[cmToddy in reply to piglette]

Yes I understand all that but they are not as

Dangerous as Pred and not as much rush to get off them. I have my Syn test in three weeks and hoping for good result, so I can reduce dosage.

[Italybound62 in reply to cmToddy]

I have upcoming appointment with Endo doctor and expect will be given Hydrocortisone. I’m currently at 2mg methylprednisolone. My Rheumatologist is concerned about adrenals so referred me

Do you know how long you might be on Hydrocortisone?

[cmToddy in reply to Italybound62]

I have been on them since last May after having an emergency transfusion due to low cortisone levels. I started on 30 mg but now am on 15 mg. If my Syn test looks better I hope to start reducing down. Fingers xd for us both:

[MarksPoint in reply to cmToddy]

Thanks for your reply...I have been wondering about Hydrocortisone but will of course have to be guided by my Rheumo...who I cant see until next Tuesday. In the meantime I decided yesterday to start 5mg Pred as I was so out of it, if you know what I mean. I'm hoping it helps.