Prednisolone diary 10 - a disastrous experiment

[whisperit]

Since getting down to 4mg daily about 10 months ago, my fatigue has steadily increased. I have become virtually housebound, and wake each morning severely nauseous and exhausted.

6 weeks ago, a synacthen test confirmed that I have developed adrenal insufficiency due to 2 years of steroid use. It was suggested that I try adding just 1mg onto my daily pred dose to try to improve my functioning.

I tried that for 2 days. The result has been a full blown return of the paroxysms of muscle tensing, sweating, shaking and nausea that first appeared when I was reducing from 20mg.

The disturbing thing is that two weeks later, after I have returned to 4mg, I am still having them, kicking in now after taking my usual dose. Once they start, it takes about 4 hours before I stop retching, shaking and tensing.

It seems I'm caught between the devil and the deep blue sea - I can't cut my pred because of my adrenal insufficiency, but I can't increase it either.

I have a theory. Pred increases the sensitivity of adrenaline receptors, and the symptoms of the episodes are very similar to those of a severe, prolonged panic attack. So I wonder if the combination of adrenal insufficiency and pred dosing has somehow caused my adrenaline/catecholamine sensitivity to get stuck in the "Max" position, perhap due to inhibition of the enzymes that normally clear the receptor sites....

Unfortunately, my GP has never encountered anything like this and has no idea what to do. Neither do I.

PS My GP's parting gift yesterday was the news that my CK levels are "very high". As I told him, "I'm past caring. Frankly, I am surprised that even one of my test results is even vaguely normal. Bye!"

[Melba1]

🙁 surely there must be some specialism of the medical profession that experiences this in their patients on a fairly regular basis and can help you?? Rheumatology and endocrinology must have lots of people in this situation and a plan? Or not? 😬 We’re all warned about adrenal insufficiency so the medics need to do something surely?! Maybe you could try turning up at a large teaching hospital’s A&E in the midst of one of these attacks? You’re probably quite a fascinating case and once they’ve seen you they should then properly follow it up?

Have you tried going back to a higher quantity of Pred? (With consultant’s permission of course!) Like 10mg or something? I know it’s been awful weaning yourself down but would be quite telling as to whether that’s then better or worse and some people stay on that for ever.

Sorry it’s so rubbish at the moment 🙁 Hope the spring is bringing lots of birds and wildlife to your garden though 🙂

X

[whisperit in reply to Melba1]

Thanks Melba,

You make very wise points. At least, I think they are wise, as they are exactly what I would have thought too!

I have presented in A&E during an "episode" and was admitted for a day of observation. However, once they had done bloods and ECG to make sure I wasn't having a heart attack, they lost interest - they said, "You're under the respirology and rheumatology teams, so we will leave it to them to sort things out". So I was discharged. I have since seen a neurologist, sleep specialist and - just recently - an endocrinologist. What has happened in each case is that they do a single appointment to exclude the most common/obvious causes, find nothing common/obvious, and discharge me back to the rheumy.

I was especially dismayed that the endo did such a perfunctory job. He said he wouldn't see me again even *before* I'd had the synacthen test (which then showed adrenal insufficiency).

Luckily, this issue does seem extremely unusual, so I don't think others have to worry too much. I have found one other person in an adrenal patient group who has suffered for 8 years and seen multiple private consultants. She gets some relief from a potent off-label med, but can only take it for brief periods until the side effects kick in - neither she nor her consultant know why it works! The quest goes on.....x

[Melba1 in reply to whisperit]

Hmm when do you next see rheumy? Although would have thought it’s endo’s area?? Although from what I hear from thyroid sufferers they’re often not interested if your issues don’t show in your blood - although you now have ‘proof’. Is he still not following it up after your test results?

Do you put on a brave face in these appointments? I think in your situation I’d be at the point of lying on their clinic floor and crying! If that doesn’t appeal I’d try a different A&E and say (or get someone else to say for you) you aren’t well enough to leave without the correct diagnosis, plan and treatment. I did that for my husband when he had a prolapsed disc in his spine. He was in agony, increasing nerve damage to his leg and they said they’d send him home until they could fit in the operation 6 weeks later. I said I wasn’t going to be responsible for him in that state and wouldn’t take him home so they could either waste hospital resources by keeping him in hospital for 6 weeks or operate sooner so permanent damage was minimised. I had to be really pushy but we reached a compromise in that they found someone who could operate within 2 weeks so I took him home for that time but he was in agony. It’s a shame that it’s such a battle sometimes and the sickest and most worn down are in the worst position to fight it.

Maybe we should have a system here where those of us in a healthier more energetic phase represent those in the worst health?? Too many people are being left with no/little quality of life when something could be done 🙁

X

[whisperit in reply to Melba1]

You're right. My neighbour called in yesterday to get a witness for her "living will". She's a retired GP and used to locum in my surgery. She said that even despite how well they know her, even crawling in, sobbing had not worked for her. She recommends 2 alternative approaches. One is to produce blood test results that are so extreme that they break the machine (anything less than a new world record will be put in the pile marked "do tomorrow"). The other was to make an appointment with the least assertive doctor, stride in with your demands and not leave until they are granted. x

[whisperit]

Thank you Lou,

As with everything else, I'll have to organise the CK repeat myself. I do think the medics recognise there's a problem - but no-one wants to "own" it. For instance, the cardiologist saw me in a review in full "crash" mode early last year, sweating, shaking and retching, and said, "I wish I hadn't asked you to come all this way to see me" (it was in a hospital 30 minutes drive away from his usual OP clinic). At the end of the appointment he said - "I'm going to discharge you, but I will write a letter to your rheumy suggesting an endocrinology referral" The plan is to see what my rheumy has to say next month, and then look for another ?private? endo who will take the time to consider my symptom picture with care x

[cuttysark]

So sorry the misery and the mystery continues. Another endo is a priority I think. Hopefully your Rheumy can refer next month.

I was given the hydrocortisone first when adrenal insufficiency was diagnosed and then the autoimmune disease diagnosis followed ,so I was put on Pred.

It was obvious to my gastro and also Rheumy that I was getting cortisol crashes on just the Pred dosage so they told me to take the hydrocortisone also.They thought I was not properly absorbing the Pred due to gastric and pancreatitc issues.

I have had that regime for four years and there is no problem from any of the medics of the different departments I see that I have to take hydrocortisone along with the Pred. None of them have a problem with that.

My mystery just now is that for the past three months I have been sweating constantly, rapid heart and other simptoms of low cortisol despite my drug regime ,which should be sufficient!

Like you if I escalate the steroids the sweating gets worse but if I lower it I sweat also and have a cortisol crash. I don't have retching as you do but have bouts of sudden diarrhea and nausea. Your body tries to rid itself of everything when it senses a cortisol crisis is approaching. I get stabbing pains in my legs and have to rush to the loo, then get faint and sweaty from my head until I take a massive dose. of hydrocortisone.

Next week I see cardiologist as my heart symptoms are related to those slumps also. I will ask about seeing an endo again. It is 6 years since I saw one.

My vet wondered if the thyroid had gone crazy with the Pred?

So difficult to get any answers at all.

Hope you get some progress soon Mike. X

[whisperit in reply to cuttysark]

You've had a lot to cope with, cuttysark. Your thoughts about trying different steroid regimes are good, and I asked the GP about introducing a small amount of hydro into the mix this week. Despite my arguments that it wasn't unusual, he was adamant that combining pred and hydroxy was not advisable and would not prescribe any.

Hope you get some progress too

X

[cuttysark in reply to whisperit]

Pity your Gp is so ignorant about low adrenal and hydrocortisone, frightening really!!! Do you have your Epi pen yet? Does the Gp realise the Epi pen provides hydrocortisone not Pred as it is absorbed better?

I have done a wee experiment myself today. I was getting more and more signs of low cortisol. I am at week 5 of my 12 weekly Pred injection and taking I mg oral Pred daily plus 15 hydrocortisone. I should not on paper be deficient but I know that is what is happening. Those signs were all there in the months before I was diagnosed 6 years ago.

So today I have increased the hydrocortisone, to see if the sweating and other symptoms disappear or reduce. Fortunately I have a fantastic Gp who is with me all along the way. As she said we have to try and find an answer and taking increased Hydrocortisone for a little while is not at all dangerous ,so why not?

Will let you know if I get a clear result, but somehow I doubt it!! Our bodies seem to be a total mystery! X

[whisperit in reply to cuttysark]

Yes, I have an emergency hydrocortisone supply - but it's not an epi-pen, it's a standard syringe, needle and ampoules of hydro. Very handy for when I am in an adrenal crisis - all I have to do is break open the ampoule, open up the needle and syringe, fit the needle, draw up the hydro and self-inject (sarcastic face).

I do think an experiment with low dose hydro is worth a try - there may be something subtle to make it less likely to trigger the nasties.

Hope your experiment works - let us know.

x

[misty14]

Hi Whisperit

So sorry you have been diagnosed with adrenal insufficiency and are caught out with the treatment!. Surely there must be an answer for you because your symptoms are so dire!. What about changing your gp?. The one you go to sounds pathetic to me. It's always good to get a second opinion!. Do hope you improve soon. It makes me grateful I've been on steroids for years and have not got this problem. Hope your getting lots of wildlife. X

[whisperit in reply to misty14]

Thanks misty,

I do feel fed up with moaning. Plenty of people here are struggling with worse problems than me.

The mixture of symptoms is absolutely maddening. As I type, my pred plasma level should be peaking (i.e. 4 hours after taking it). Yet over those 4 hours, I've had increasing headache, nausea and weakness - all symptoms of cortisol insufficiency. I usually feel best late in the afternoon or evening, as my cortisol levels must be dropping to a low level. Adding pred produces the vicious sweats/shakes etc, but I have adrenal suppression, so dare not drop my pred dose....

So which is it? Have I too much or too little cortisol? Or is it something else entirely?? Oh, for an endo who will sit down and think this all through, instead of one who orders a synacthen test, gives the result by letter and disappears!

There's a Blackcap singing in the garden this morning, which is cheering.

X

[misty14 in reply to whisperit]

Oh Whisperit what is the matter with these doctors?. Why didn't the endo follow thru with an appt to talk resukts with you?. You could ring his secretary and explain and see if you could get one because you have important treatment questions that need answering and need help!. Your symptoms are awful and as you said are making you house bound which isn't right!. Failing that could you bring your Rheumy appt forward now you have this new diagnosis?. You need this help and I'm sorry I can't answer your questions!. Lovely having a black cap visiting!. We've had hedgie sightings late at night eating some food. Love this time of year!. X