Hi everyone. This may be a long post so please bear with me.
I've had lupus for 35 years and have been on prednisolone on/off for all that time. Main symptoms being joint/muscle pain, chronic fatigue and migraines. In 2013 (I wasn't on prednisolone at the time). I was diagnosed with fibromyalgia/cfs, and the quality of my life took a massive nose dive. So much so, that I had to use a wheelchair outside of the house. In 2018 my lupus flared up and I was put back on prednisolone. Despite the lupus flare, in time I did start to see an improvement in the my quality of life. And after about a year I even stopped using a wheelchair.
But everytime I tried to wean myself off the steroids, my lupus would flare up, and for a few years it was just a vicious cycle. Then covid happened and also sadly my consultant passed away. It took a couple of years for the Rheumatology clinic to restart, so I stayed on the steroids and I was ticking along (not plain sailing) reasonably well. Once the clinic restarted, I was seen again,(new doctor) I voiced my concerns about coming off the steroids. It was decided I would be referred to Endocrinology for a short synacthen test, to check my adrenal glands.
Conclusion: my adrenal glands are slightly surpressed, but functioning well enough for me to come off steroids and my lupus is stable enough to come off the steroids. Great news!!! You say.
BUT I'm scared to come off my steroids completely, because I think 3mg of prednisolone just keeps me ticking along nicely. But at the same time, I'm worried if I stay on the steroids, my adrenal glands may be suppressed even more, in time and then that's another problem to worry about. Any advice/thoughts are welcome.
Results of the short synacthen was 373 nmol/l
Written by
Lily25
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Staying on a low dose of pred when your adrenal function is has obviously started to recover shouldn't make it any worse - it might if you INCREASED the dose.
If your concern is that you still need the pred for your lupus - you could try the very slow and gradual tapering that we use over on the PMRGCAuk forum for such an event. By reducing the dose in very small steps and leaving plenty of time betweenreductions, you can see if you do less well on a lower dose and go back to where you are comfortable, Most of us know the feeling about rocking the boat - you aren't alone there!
We recommend not tapering more than 1/2mg at a time at this stage and smoothing the drop by just dropping the dose on a single day at first and making the gaps between the days shorter until you eventually reach every day new dose. You can spread it out over as long a period as you like.
Thank you for your response. I have been told by endocrinology that the weaning will be very slow and I will also be monitored with regular blood tests etc. My concern is more, what will be the quality of my life once I've been completely weaned off them. Quite often I can feel unwell, but my blood test won't show that my lupus has flared. My lupus and fibromyalgia are better managed by being on a low dose of prednisolone. Maybe that's not a good enough reason to be on them ?
Your fibro is better managed on pred? Not fibro then! But there are a lot of rheumies who won't agree I know - it is a fight we have a lot.
But what you can aim for is the LOWEST dose that does as well as what you are on now - it is what we do, I am a great believer in QOL - life is nothing without quality. Maybe 2mg or even 1mg will keep whatever it is inflammatory that is in YOUR personal mix of autoimmune disease and most rheumies would be happy with that. And don't be browbeaten into tapering faster than you are comfortable with - their idea of slow and ours don't often coincide even if endos do it all the time! Some of our people have got off pred by reducing 1/2mg every 2 or 3 months or more. Any faster and they struggled. If you struggle - say no more.
Hi Lily. I have a slightly different take. I’m with you on quality of life being most important. Having myself been continuously on steroids for over 40 years I too found myself “stuck” on them. However with discussion my endocrinologist and rheumatologist accepted my need to have a similar quality of life meant that I remain on them.
Listen to your body. Discuss with the specialists but this is your life too!
That is daft - they aren't going to have an easy job stopping pred after even 10 years so why then bang on about it and risk upsetting a patient? Not everybody has the ability to speak up for themself against the "qualified" team. My aim on my home forum is provide the members with information that makes them better able to argue their case. And for them to know that that is OK - the guidelines do emphasise shared decision making.
Hey no - THEY are daft banging on about it and obviously you have been able to argue your corner, Sorry if it came over the other way, I was totally agreeing with you.
I am expecting a similar problem when I eventually return to the UK. Here in Italy I get tocilizumab which got my pred down to 7mg from 19 but I can't get any lower without bicep and forearm tendinitis returning. 6mg leaves me very wobbly with adrenal-type issues. Here my superb rheumy is pleased I am stable on 2 weekly TCZ injections and 7mg pred. But I fully expect a refusal in the UK. My original diagnosis is PMR - supposed to be over in 2 years according to many but mine is still there after over 20 years. I will get some pred because of the adrenal question but I doubt it would be enough to keep me functioning on its own. Scary prospect.
I’m stuck on 8 mg. They have accepted that at last but I do have adrenal insufficiency so am at risk of an adrenal crisis. As a retired nurse, I’m not too anxious about this but am about to have a total knee replacement so I’m hoping the hospital will take care of me! Stick to your guns…it is possible. I’m hoping they listen understand and respect your wishes upon your return x
TCZ isn't approved for PMR in the UK, can't even get it for more than a year for GCA which is a piece of nonsense, No, I'm not anxious about an adrenal crisis - just hope I recognise it before I can't if you see what I mean!!
In our experience, the NHS does do OK with surgery and stuff when you are long term pred patients - but we tell everyone to make sure it is the ANAESTHETIST you tell not the surgeon as orthopods seem singularly oblivious of adrenal issues! And the one bad experience that was met was the nurses not providing the pred (or anything else) at the time the patient needed it to avoid problems. Make sure you have your endo or rheumy watching your back for post-op need for extra pred in the event of a flare or adrenal wobbles. Orthopod wards are very poor at medications as my husband discovered to his cost - 3 days without his warfarin because they claimed they didn't know what dose cost him a suspected PE. We decided not to confirm it - the contrast wouldn't have been a good move!
You might ask your rheumatologist about a study that showed keeping lupus patients on low dose steroids is advantageous in preventing flares. I will try to find the study. I know these things are re-examined and interpreted. It seems to back up your fear of going completely off the steroids. Does that do more harm than good?
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Dysautonomia/Adrenal Exhaustion
Adrenal insufficiency
