Hi, I received a letter from my Rheumatologist saying that my cortisol levels are normal following the Synacthen test 2 weeks ago.
It says it is now safe to stop taking steroids.
My question is, as i have been on steroids for over 5 years should i just stop or continue reducing. I am now taking 2.5mg prednisolone reducing by 0.5mg every 2 weeks.
Any help would be appreciated.
It says it is now safe to stop taking steroids.
Not it’s not, not in the way it’s implied. You cannot just stop steroids, and even reducing at 0.5mg every 2weeks is risky. I’d lengthen that to every 4 weeks.
Are they also assuming your PMR has gone? That may not be a fact either.
It can take up to a year (longer for some people) for your adrenals to be back to 100% -so not how Rheumy can say what they did. And do be aware that if you find yourself in a stressful situation you may “wobble” .
DId something get lost?
Pressed reply too soon -so now edited…
The way HU is behaving for me this morning the reply could have gone into orbit!!!
Did you mean to stop there?
Sorted thanks.. got 2 proof readers 😊
Hi DL thanks for your reply. I will follow the advice given by many people on the forum and do it slowly. This is an extract from the rheumatolgists letter. "
"Your synacthen test, that you recently had on the Day rheumatology unit that was performed to test your cortisol levels was within normal range. As such, it is safe for you to come off your prednisolone. You shall be reviewed within rheumatology as previously planned." This could be interpreted in different ways and this was my reason for asking the learned folk on here.
Yes it would be better if it had said - we can discuss how you can come off Pred safely at next appointment… or similar..
The fact that a kick with synthetic ACTH made your adrenal glands produce a burst of cortisol shows they CAN work. It doesn't show that they are reliably doing so day by day. And 2.5mg pred is loads to keep low level PMR disease activity under wraps - even 1/2mg will do that but dropping to zero leaves low level disease activity to continue to produce inflammation that slowly builds up over time until it reaches a level that causes symptoms. Some people on the forum have found their symptoms took anything from a few weeks to a few months to reappear - the underlying cause of the PMR symptoms hadn't burnt out, it was just very low.
I would continue to taper as you have been - which by our standards is fairly fast - and be aware of feeling unwell if you are under stress at any time. If you feel faint, dizzy, sick or confused, seek medical advice immediately, calling 999 and saying possible adrenal crisis when asked the reason for the call. Better safe than sorry - it can make you very ill.
Hi PMRpro, Thanks for your advice. I am not exactly in perfect physical or mental condition at the moment. My son in law has just been diagnosed with Lymphoma at 27year old. So there is a lot of stress at the moment. I will leave it a while then taper slowly.
Sorry to hear about your son, so definitely no reducing for time being….
So sorry to hear that - and in that case definitely NO tapering. You might even find you need a bit more to cope with the stress. Been there, done that - and I wasn't down to 2.5mg! Still am not and I know when I have something stressful to do.
Eek!that’s pretty irresponsible advice in my opinion. Your Synacthen test has merely established that your Adrenal function is capable of working, not that it actually is, as I understand it. You still need to give your system a chance to recover. This means a very gentle, slow taper of half a mg, every 4-6 weeks, pausing at the first sign of ill effects - dizzy, sick, deathly fatigue or worse. How are you on your current regime? It still seems a bit fast. Are you using DorsetLady’s tapering system - tried and tested? Never suddenly stop taking Pred and good luck. This bit is very important.
Hi SJ That was my first reaction but then read the letter again and it could be taken two ways. this is the extract that I copied from it earlier.
Your synacthen test, that you recently had on the Day rheumatology unit that was performed to test your cortisol levels was within normal range. As such, it is safe for you to come off your prednisolone. You shall be reviewed within rheumatology as previously planned. I'm going to follow the advice from people that actually understand this condition. That is the members of this group. Thanks again
The mind boggles. If I had stopped taking them dead on 2.5mg I would have been a heap of uselessness. I guess it depends on if you are sailing through each day feeling tip top. The Synacthen test told you that if given a whack of synthetic hormone that mimics the brain shouting at the adrenal glands, your glands can do it. What it doesn’t tell you is if the whole process from detecting a low level of cortisol all the way through to producing the right amount of cortisol every day for every situation. One can be caught out sometimes for no apparent reason or if you have an unusual event that requires an extra effort from your adrenal axis. I was having to reduce by 0.5mg over 8 weeks upwards but I was having a particularly bad time by all accounts. You could try stopping (if you are properly ok on 2.5mg) and see as it is easy to take them again. That way you have evidence in either direction to show. Never go out without Pred in any case. Or you do what feels ok to you.
If a doc has Endocrinology goggles on, they might not be thinking PMR.The Rheumy will be reading that off the report (mine said the same at 1.5mg). 5 years doesn’t mean you’re out of the woods regards PMR and 2.5mg can still be a handsome dose for controlling symptoms if you have slow drip autoimmune activity.
Hi SnazzyD, Thanks for the reply. On top of the stress already mentioned I am also competing with OA and spine problems so the advice on here is much more relevant as you have all been there before. I'm seeing my GP next week and she has always been open to the info that i have given her from this group Ill take it slowly when I feel I am ready. I have upped the dose of steroids to 5.5 for the last 2 days(My choice) but will taper back to 2.5 and the OA is much less painful. I don't want to go on any opiod's as Ive done that before and didn't like the results.
Another rheumatologist who was not listening during their training
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