Tapering Issues.I am having problems when I taper below 3mgs. Dropped from 3 mgs to 2.5 over a 3 month taper.( This is 2nd attempt) Thought I was winning but caught a nasty cold virus and kept going thinking I could cope.
Also had bereavement of best friend which hit hard.
Have now crashed with aching body fatigue and low mood and have spent past few days in bed. I am normally a busy person with lots of to do lists so this does not sit well with me.
I had a synacthen test 2 days ago and nurse suggested I tough it out till results come through next week. I was meant to be going on holidays in a few days but now don't feel up to it. Luckily I am retired and can rest when I like.
My question is could these symptoms just be steroid withdrawal ?
Or should I get a blood test from GP to check PMR inflammation levels?
I am reluctant to increase steroids having come this far but I don't think I can cope with this level of discomfort for much longer
Any advice welcome.
Written by
lilydunn
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hi, sorry to hear about your friend… bereavement can really knock us off course… and virus wouldn’t have helped either, but would say sounds very much like adrenals struggling, and probably have been more than you realise - and with both things mentioned they need to be in tip top condition to get you through.
You may be a very busy person , but sometimes your body tell you to easy off… and now is one of those times.
If you are using one of the slow tapering plan we advocate on here - then they are partly designed to help alleviate steroid withdrawal, but if you are too low for your illness you are too low… no matter how you got there. A slower plan will also help with your adrenals. You could ask for blood test, but honestly think it’s more likely adrenals…
The synacthen test will only tell you your adrenals are capable of working, not that they actually are - and to what degree…
Suggest you return to 3mg unless you already have and stay there for a few months and give them a chance to catch up… if you up Pred and it’s adrenals, you’ll only have to come back down again, and maybe go through same issues.
On another subject, if your give your post a title pertinent to your query you will get related posts,, no need to use your name, that comes up automatically at the end.
Sometimes life just loads on a bit too much and we all have limits. Your need for cortisol will have increased and who knows what your immune system has decided to since the virus. You have been a busy person but perhaps you been able to because there hasn’t been any extra load. Grief doesn’t take a day off and perhaps you need to accept that for now plan A (for Action Woman) isn’t viable for now . The Synacthen test just simulates a hormone ‘shout’ from the pituitary gland and doesn’t tell you if the process to get pituitary gland to do that is reliable. A reasonable result doesn’t mean you should be able to take on anything. Patience is key again.
My experience with poor adrenal function was that even when things improved, it was a while before I could navigate upsets. When I was low I felt flu-like (minus fever) and knackered. Give yourself some TLC and perhaps as DL says your adrenal glands aren’t quite ready to cope with, shock, sadness and post viralness all in one go, and popping up to 3mg for a bit needs to happen.
I think you are probably experiencing the dual problems that arise at low pred doses. You are not aiming relentlessly for zero -you are looking for the lowest effective dose, the lowest dose of pred that gives the same result as the starting dose did. You should never have worse PMR-type symptoms at the end of a taper step than you did at the start of it. If you go too low, even 1/2mg, over time the inflammation can build up until you feel it - but the blood tests may not show it while you are on some pred. Symptoms ALWAYS trump blood tests.
And the other is that once you are below about 6mg you are likely to experience the effects of poorly functioning adrenal glands as the pred dose is no longer plenty to supply enough corticosteroid for the body to function as it should. The most common effect there until they catch up is fatigue - and they take their time, it doesn't happen overnight.
It is all very well the nurse saying tough it out - is she offering to come round and keep house for you? You may well have to cut back on some of your to-do lists but to be forced to stay in bed is absolutely NOT necessary, It will take a bit longer probably but a few more months while feeling half decent beats being in bed all day!
And don't underestimate the effect of the bereavement. It is a major upset in life when it is someone close, and can take a lot of adrenal function, If it isn't there, you will really suffer. I had to up my pred at a much higher level than you are at to cope as a single carer and then again some months after my husband died. And you have been dropping your pred and trying to function. No wonder you feel awful.
Thank you all so much for helpful advice. I think I will increase to 3mg as suggested and hopefully get up one day soon. Another comment the nurse threw in was " it could be that something else is going in your body and is only showing up now that steroids are reduced".This is always a slight concern for someone like me who has suffered breast cancer in the past.
hello, my story is exactly the same as yours I am 67 . I have had 10 plus years with PMR .This was my 5 th attempt at getting below 3 mgs. I have experienced the same events as you and found myself feeling back in the PMR again . Each time having to go back up, this is such a hard stage to get past , as we are lowering at an extremely slow rate 0.5 every 8 wks .it’s not surprising some thing comes along to interrupt your well-being. I also had a blood test each time I relapsed but they have always been normal, even though I felt at my most dreadful with unmanageable fatigue. My synatchen test was normal as well. So I remain at a loss at how and when I will stop steroids. If I ever can . This is not the case for all , but I feel I just want to agree on how hard this is. Good luck hope you get there.
But at least you are at a really low dose - and outside the UK and USA it is accepted that a need for that sort of dose long term exists, After 17 years of PMR and 13 of pred I was stuck at 19mg, Here no-one thought it impossible and I was never nagged. I'm at 5mg now - but only with Actemra/tocilizumab. I'd love to get to 3mg ...
I am in same place as you . I have finally gone back to 5mgs after having intense pains and aches across left chest, and absolutely no medical help. I seriously did not think the chest pains and aches were anything to do with PMR , but within 12 hours , aches and severe pains subsided . Who knows ? . Nobody it seams . I really did not want to go back up . I want my hair back , I want to be off drugs , but in reality , if they help, I will take them . I always think it may be coincidence that it helped tho . I am concerned about my low mood tho. I can’t understand why I am in such a low mood
I increased my pred to 3mg this morning and can't believe the difference 0.5 mgs makes. Feeling brighter already. Thanks you again for advice and support.
Don't be in too much of a rush to reduce again. Three is a very nice dose to be on, few if any risk of side effects, but helping you function well, and you can attempt a taper in a few weeks when you're feeling better. I always know the difference when I take .5 more or less (at the moment after quite a few years down to .5 mg with an occasional 1 mg). Next taper will be from .5 to zero and hope it works! There's always hope.
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