AIBU to decide on my own medication doses?

[ConfessionsOfTheSteroidQueen]

I’ve name changed for this as nobody in my real life thinks this is a good idea, so I told them I wouldn’t do it but I have.

I have severe Rheumatoid Arthritis and associated lung disease. I married my husband and had my children when I was happy and healthy but I’m now totally disabled by it. After a very bad episode, I ended up in hospital and on a long term dose of steroids. This has remained for many months. I am bloated, depressed and an insomniac due to the steroids.

An opportunity has come up to try a stronger drug that is safer for my lungs and gives me a fighting chance of being able to walk and have a life. I have to meet the criteria which, in theory, I would reach but I am worried the steroids will mask the inflammation and I’ll be ineligible. The assessment for this new drug is next month and I don’t have much time. If I get on this drug and it works, I may be able to come off steroids.

I thought, fuck it, I can’t wait for my life any longer. I’ve rapidly started dropping my steroid dose. I have a massive headache but perhaps it’s coincidental. I’m dropping the dose faster than I normally have done but not at a dangerous rate.

Just needed to tell someone as I’m such an honest person. AIBU and a twat? I close my eyes and imagine being on this new drug; being healthier, taking my kids to the park, being off steroids, getting back into work and maybe even studying.

How long have you been on steroids for? Just worried about adrenal failure if cone off too rapidly

Seriously dangerous, adrenal failure can kill you OP. Please see a doctor to discuss this ASAP, like in the next 24 hours. If you’re unwell you should go to hospital tonight.

I’m obviously not saying it’s a good idea but I will tell you that I did something very similar. Different condition, different medication but what I’m saying is that I understand your desperation.

I hope it all works out for you but please stay safe.

Ive been on and off steroids for 10 years. I usually get put on 40-60mg to get me out of a bad spot and taper down over a few months.

I’ve been on this dose (15mg) since the middle of last year. I’ve only dropped 5mg in a week. I’m dropping by approx 1mg a day. I won’t stop them completely, just get down to a tiny dose.

Maybe I’ll go to a private doctor and get another opinion. I hate hate steroids. I’m fat, depressed and tired. I think I’m an idiot. :(

This is really, really dangerous and I think you know that. You must talk to a doctor about it. I know the steroids are awful, but you're on them for good reason.

It is unbelievably dangerous to do this. Your body will have stopped producing its own natural steroids because you have been on prescribed steroids. I have had fit young 20 year olds die within hour|}s from adrenal criss, let alone anyone older. You need to seek urgent medical advice. Go to A&E now. You are at real risk of dying within the next few hours.

You need to taper, and talk to your GP.

Different condition, different medication

That is irrelevant then. Many drugs are perfectly safe to stop suddenly. Steroids are not.

www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

you'ld be better off contacting consultant (assume you are under specialist care) even if it's via secretary, and check with him/her 1)if you need to prove inflammation - there might be enough evidence already in your medical history 2)if not, if it's safe/sensible to reduce steroids, and if so, how much and how fast.

10mg is still way above what your adrenals make in an average day. I would think it's highly unlikely you will die in the next few hours.

It would be sensible however, to research symptoms of adrenal crisis and if you are going to taper do it more slowly.

You can lower much more safely if you have a month to do it

Could I ask what the new drug is? There is often leeway in the assessment process to allow for steroid treatment. It would be unreasonable (and possibly unethical) to make someone ill eg. by reducing/stopping steroids just to reach an ambiguous disease state. Speak to your specialist as you really are risking your health by reducing your steroids too quickly.

You are being totally stupid. You can’t reduce steroids as you are doing, it’s dangerous. You need to take medical advice on reducing the dosage

I too have severe rheumatoid arthritis and am currently in a flare necessitating me to be on a course of steroids. At my recent appointment I also wondered whether the suppressing effect of the steroids would distort my condition in the eyes of my rheumatologist. However, it was clear that she was familiar with this situation and in fact the fact I needed to rely on the steroids showed clearly that my arthritis was active. She, therefore, treated me appropriately, which meant prescribing a longer term treatment to enable me, hopefully, to stop my steroids once it kicks in. She categorically told me not to cut down on my steroids until it was obvious that the long term treatment was working. Hopefully, therefore, you will be considered eligible for the new treatment which may well change your life for the better.

The trial drug assessment will have criteria for patients on steroids (it might be that you just need to get down to a steady dose of 10mg). Talk to the team, as they will also want to get you onto the study if can be facilitated. If you weane too fast, you also risk a flare and being bumped back on a farhigher dose.

@choirmumoftwo

It is rituximab infusions. I’ve been on hold with treatment because my lungs have been unstable and worrying. They’ve been much better and I am in a better state to trial new RA medications.

If your new drug is humira or the like don't bother. Tapering is fine but 1mg a week.not a day. You will most likely flare up before you get much lower.

Thank you, everyone. I have probably not been thinking very clearly.

I’m under the care of a consultant. I can phone and leave a message via the clinical nurse specialists or the consultant’s secretary. I probably should. I’ve become totally overwhelmed with my low mood and lack of sleep. I know my physical health is very important but I cannot seem to get these medics to understand the impact the prednisolone has on my mental health.

I am actually also on infusions of rituximab. They worked wonderfully for me previously - I felt almost normal! I decided to change to a different drug due to a few chest infections. It was a mistake I think now and have now gone back onto this drug and am currently waiting to find out if it works so well the second time. 10mg steroid is keeping me mobile while I wait.

As previous posters have mentioned, you should be fine in your assessment. Good luck with the rituximab, I know it is life-changing for many people (recently retired rheumatology nurse).

Why not ask about im steroid injections instead? I get them and there are far fewer steroid side effects - at the same time as being on biologics. And are you absolutely certain that it's the steroids negatively affecting your mood/sleep? Uncontrolled inflammation is known to have equally mood lowering effects.

It's got to be safer than stopping them altogether.

10mg is still way above what your adrenals make in an average day. I would think it's highly unlikely you will die in the next few hours.

The typical physiological cortisol daily production is equivalent to 7.5 mg of pred.. However that is in a well patient. The OP has, by the sound of it, significant joint & lung disease with acute flares . On top of that, OP has already told us that she is symptomatic. She is at imminent risk. The headache is particularly concerning because it suggests she may already have developed hyponatraemia and hypoglycaemia.

Adrenal crisis is one of those conditions where it is not worth taking a risk. Anyone with symptoms after abrupt steroid withdrawal/reduction needs immediate medical assessment. To quote the Society for Endocrinology,
"if adrenal crisis is suspected, treatment should be initiated WITHOUT DELAY.
Short-term administration of high doses of glucocorticoids is never harmful but failure to treat adrenal crisis can result in the death of the patient"

I know the symptoms of an adrenal crisis, I have Addison's disease.
I have suggested the op research symptoms of an adrenal crisis.
For what it's worth low sodium and low blood sugar is usually one of the last symptoms of crisis.

Op here is a chart detailing the symptoms of low cortisol as well as an adrenal crisis. If you have any symptoms other than a headache I would phone 999 and tell them you suspect an adrenal crisis. Please don't go to a&e you will sit in the waiting room for hours because you "look ok"

You should be fine with your steroids and rituximab. I would speak to your consultant and they will advise accordingly, if they’re anything like mine they will do all they can to help you get on the trial.

I also have RA and completely sympathise with you. I hope this works out for you

I know the symptoms of an adrenal crisis, I have Addison's disease

Well, in that case, you should know better than to reassure the OP that she is unlikely to die in the next few hours. You can't possibly know that. I have seen patients die from adrenal crisis with insidious, completely undramatic symptoms. The mortality rate is 1:20. And electrolyte imbalance is a common cause of death and is typically already present by the time the patient seeks help.

Having a disease does not make you an expert in treating its emergencies. It's totally irresponsible to give the OP false reassurance. If she was having central, crushing chest pain, would you tell her not to bother to go to A&E, because it might be indigestion? It might be indigestion, but only an idiot would take the chance. Untreated adrenal crisis is just as dangerous as myocardial infarction (heart attack) and it's harder to diagnose.