Towards the end of December 2017, I started on an extremely high dose (75mg) of prednisolone and since then I have gradually tapered down to a more reasonable dose but try as I may, I couldn't go beyond 3mg. Sod's law, I became ill on 3mg and I went back up to 5mg and before that 10mg. Eventually, I was put on a steroid spearing immunosuppressant. Thankfully, in February 2022, I was given the go ahead to completely come off of prednisolone but under the proviso that it was tapered and not sudden.
As of today, I'm alternating between 2mg and 3mg and the fatigue, joint pain, rash on my hands including reduced appetite has kicked in with an almighty force. Yesterday evening (2mg day) was really bad due to sudden severe stomach pains. Overall, I'm feeling very unwell and weak
Is there anything I can do to support this steroid tapering without all of the physical side effects? As in, in terms of making it more of a pleasurable experience. Not keen on reaching out to my hospital consultants because they'll just say to increase the dose again. The steroids, in particular the prolonged high dose, has dramatically weakened my muscles and started to effect my bone density. Nevertheless, I am still grateful for this risk benefit but I just need to part ways from it.
Your tips including experiences would be deeply appreciated.
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Amakura
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Not really - the only thing that works to reduce pred and allow adrenal function to return is there being less pred in your system. And I suspect the problem you are having is the adrenal insufficiency side of things after 5 years on pred, especially having started at that sort of high dose, your adrenal glands will have gone into hibernation in terms of producing cortisol because they know there is plenty of corticosteroid present and you don't need any more. The longer you are on pred, the "rustier" the system gets and the longer it takes to wake up and start functioning again.
You do need to ask your doctor to at least do a basal cortisol blood test - that is a blood sample taken in the morning, between about 9am and lunchtime without having taken that day's dose of pred, to assess how much cortisol your body is producing. If the level is below 100 you have adrenal insufficiency, if it is above 450 you have normal adrenal function. In between those readings it is advisable to do a synacthen test where you get an injection to stimulate the adrenal glands to produce cortisol to see if they can in response to demand. The higher it is between those readings, the more likely it is that adrenal function is returning to normal despite you still being on pred - but there is no point doing that test until you are down to about 3mg so it is a good idea to get one done now.
You should really be referred to an endocrinologist for assessment - and no, increasing the pred isn't the answer, that will just prolong the time it takes to get back to normal. What they may do is switch you to hydrocortisone in 2 or 3 doses spread over the day. That is more likely to allow things to settle down and your adrenal glands wake up. In the meantime, you should be issued with a "Rescue Pack" with a hydrocortisone injection just in case you have an emergency and it triggers the adrenal insufficiency into an adrenal crisis. It's nothing to worry about because it rarely happens, but it can.
You will find lots of info on the PMRGCAuk FAQs page with simple explanations about reducing pred. And of you post there - someone will always give you tips about coping with reducing pred.
Thank you so, so much for your detailed response - very much appreciated.
I forgot to add that I've been taking steroids on and off (including intravenously) since a toddler but as a relative of mine was a medical professional, she used to negotiate with the hospital specialists regarding the dosages on my behalf. Sadly, she passed away prior to my Lupus diagnosis. Nevertheless, due to the multitude of strong steroid ointments/creams, hospital consultants were more cautious when prescribing pred. To be honest, looking back and now recently (2018) being diagnosed with Lupus, myositis and Sjorgrens, I believe I had it since a child but nobody thought to check! (Joint pain, unable to walk, high fever, rashes that constantly became infected, persistent swollen glands, asthma, chest infections etc. etc.).
In fact, I was referred to an Endocrinologist. Long story short, the 9am cortisol level was under 100 nmol. They tested it in Oct 2021 and Dec 2021. The latter had dropped considerably in comparison to before (59 nmol to <28nmol). A synacthen test was carried out, and the overall opinion came back as being 'potential adrenal sufficiency related to steroid treatment....and to wean down to 3mg and review symptoms'. At the time of the aforementioned tests, I was on 4mg and my natural estrogen including steroid inhalers had not been taken into account. They never made me aware of the interaction of these leading up to and just before the tests. It was via Google search, I discovered my other medications could alter the outcome of the test and then I notified them prior to the outcome correspondence but not sure if they ever received this message (it was never mentioned within the letter).
I became very ill due to compounded stress over a long period of time which involved a lot of physical activity and was rushed to A&E. After being referred to ambulatory care, they were instructed by the Endocrinologist to carry out a Prednisolone test. This was taken at 14.00hrs directly after I had eaten and taken my steroid inhalers and cream (I'm on a very high dose inhaler) and natural estrogen. I was on 5mg, at the time. Admittedly, it was carried out more than 8 hours after my pred medication. The test came back (Jan '22) as <10ug/l and previous to that, again in the same month, was 19ug/l and two months prior again, <10ug/l. Ambulatory cares conclusion was that I quote 'It [the symptoms] was all in my head...bad reaction to stress....test came back normal.... and there is nothing they could do'. *sighs*
After chasing Endocrinology, in February of this year, I was told based on all of the data gathered - featured above - that my adrenal is fine and I should recommence tapering. Despite pointing out to them the symptoms from previously including my use since a toddler and being aware of my other steriod-laced medications, the Endocrinologists then agreed to see me once I got down to 1mg - that will be in July 2022. Hence the hydrocortisone route and rescue pack has never been mentioned. The steroid blue alert card and the most recently implemented, cortisol card is my only saving grace if I collapse. That's it!
As we are all annoyingly/frustratingly aware, and from what I've experienced since 2018, trying to get them (some not all - but the vast majority) medical professionals to listen to the vital information you are trying to provide to them, is like speaking underwater or like having a conversation with a goldfish. They only listen to respond and never listen to understand. These gems that we divulge to them is there to help all parties involved and by not doing so, it inevitably increases their workload and clogs up the NHS system. Make it make sense! Also, when you're medical status is constantly referred to as being 'complicated'. With Endocrinologists, it's even more difficult to reason with them because their specialism is the equivalent of equations that are beyond my expertise and their prognosis/diagnosis centres around these complicated biological related algebra-like equations.
On a number of occasions, I thought I was going to pass out. I'm now too weak to bathe every single day. Haven't even been able to clean. It's becoming harder for me to troubleshoot (which is not like me). Thus, I will continue to taper and if it becomes unbearable, I will have no choice but to seek emergency assistance. Although A&E did say that if it happened again as none of this specialism is on call, I should seek assistance when the Endocrinologists are working - as in, not during the weekend and evenings. In the meantime, and thank you, I will read the PMRGCAuk frequently asked questions.
I've been steroid dependent for 8 years and can't get below 5mgs.i always suffer with steroid drops .my Rheumatologist has recently increased my immunosuppressants to try to allow me to reduce my steroids further .he has also told me I may have to stay on 5mgs.what is your bone protection medication ? Do you have regular dexa scans ? X
Ahhh sorry to read that Spanielmadlady . It is frustrating trying to taper off prednisolone. They also wanted to keep me on the prednisolone two years ago but - and I was a lot stronger than what I am today - I persistently questioned their line of thought and in the end, we came to an amicable agreement. Hence, the Endocrinologist referral but I've now jumped out of the fire into the frying pan (or is it the other way round?) hahaha. I've been advised to take Vitamin D and increase my calcium intake via food. However, I am struggling with the latter. So, I take Vit D +K mouth spray. With the calcium, for my immunosuppressants, I was advised to increase this as well. I asked my GP for a calcium supplement but she refused because 'research has shown that it is better to source this from food rather than supplements'. So, my search continues....
My Gynaecologist, who is wonderful, always ensures that I have a Dexa scan every year. My bone density has started - but still within the normal range - to reduce within my lower back.
My last scan showed minimal loss in lower back too but my hips had improved.im prescribed accrete d3 every month so might be worth asking your consultant tell gp to prescribe.my endo checks my vit d levels and they are currently within range.have you looked at the NICE guildlines for bone protection? x
Hello, as pmrpro says these symptoms sound more like adrenal insufficiency. Everyone needs about the equivalent of 5mg pred as cortisol which ‘normal’ people produce and they produce more when sick, injured or stressed. But if we’ve been on ‘fake’ cortisol (on steroids) we usually lose the ability to produce our own.
We can sometimes get the ability to produce our own back but it’s a slow process and some of us won’t ever be able to and will need a small maintenance dose (about 5mg) forever (this about shouldn’t really effect bones/ muscles as is what normal people are producing anyway).
It needs to be very closely supervised and your ability to produce monitored - preferably by endocrinology - as it can be very unpleasant feeling to get too low (which sounds like the point you are at) and also dangerous as you can have an adrenal crisis.
Not to scare you but adrenal crises can kill quickly. I have had several and ended up in resus really unwell. Signs are increased weakness, low blood pressure, feeling/ being sick and pain (especially abdominal as you’re getting).
I’d go quickly back up to 5mg and seek urgent medical advice. Go to A&E immediately if you feel unwell especially if get confused and vomiting.
You should have a red steroid card? You’ll need an emergency injection/ infusion of hydrocortisone. I have a letter from my endocrinologist to give to A&E saying please immediately inject on arrival and my GP is great and just injects and calls an ambulance as soon as I turn up in adrenal crisis.
People do get down 0 steroids, even people like you and me who’ve been on high doses for years but it can be very hard and your rheumatologist amd GP must be aware of adrenal insufficiency/ crisis (but some are not very clued up on it) to help you.
As pmrpro says you also need an emergency hydrocortisone injection to keep yourself but again GPs/ rheumys sometimes need to be told this.
Please take extra now (if you think of the high doses you’ve already had an extra 5-10 will do no harm) ring GP today/ go to A&E and say you’re getting adrenal insufficiency symptoms. This is a medical emergency.
I know it’s hard and demoralising to go back up a dose of steroids but totally necessary in this case and it shouldn’t be by much if your lupus is doing well. I’m just on a 200mg steroid drip in hospital now as went into adrenal crisis yesterday (vomiting meant couldn’t keep usual steroids down) and been put back to 40mg of pred and high methylpred threatened today so please sort quickly so you don’t end up in hospital and with big flare too (but do go to hospital if weak, vomiting, pain etc)
Good luck, let us know how you’re getting on please.
I’m in hospital with bad wifi but do message me and I’ll give you my number if you want some help from someone in same situation but unfortunately think you need medical help right now xx
Ahhhh reading your response made me feel really emotional. Really hope you get better and rest. Thank you, I didn't realise the extent of an adrenal crisis. Yes, it is demoralising increasing the dose. I usually break down in tears every single time. To be honest, I've always said to them that I feel fine on 10mg but 20mg is even better. My thinking is sharp and I feel like superwoman. Anything above that and I start to get some uncommon side effects.
I've been struggling all week with nausea and pain but no vomiting. I wanted to ring them but its mustering up the strength to not only be a patient but also an advocate for myself - as I have nobody to speak on my behalf. I will ring them now.
Thank you for taking the time out to respond whilst in hospital, your contribution is deeply appreciated.
Oh Amakura, it is so very hard. We feel better (well those of us lucky with them like you and me - I’m the same, much more energy and clearer brain on 20) on the steroids but then hate them too for all the long term problems.
I feel such a sense of failure when i have to increase again but know it’s essential sometimes. And a small increase for you now to get stable again can mean you could be more successful in the end at getting steroid free. But definitely need proper safe medical support to do so. My endocrinologist says every time he sees me in hospital - very slow reduction (I ignore him each time and rush it . His patient face is getting increasingly less patient 😬) but needs blood tests at your stage (I haven’t got below 12.5 in 5 years) because your body may take more time to produce it again after it’s been switched off so long.
Oh and do totally understand that pain of advocating for yourself when feeling so rubbish ☹️ We should have a system on here where we can advocate for each other and boss those doctors around as easier to do for others. I’ve sent you my number by message. Very happy to do that for you if you need someone bossy.
If you can get a letter from one of your doctors to just hand to A&E that really helps too. Mine is signed by my endocrinologist and says life threatening emergency, treat immediately and exactly what to do. Gets me fast tracked through A&E although they still make mistakes 🙄
I’ve just had a dose of 250 methylpred today as have brain swelling and attack on inner ear and feel suddenly very cheerful snd singing and laughing which is embarrassing but what high steroids does to me 😬🤣 I’d gone into adrenal crisis on Thursday and really don’t want you to too.
Did you take some extra steroids?
And any luck with getting help?
Thanks for responding, I’ve been worrying about you xx
Amakura, just to say I agree with what others say about adrenal insufficiency and the potential to suffer a severe adrenal crisis, which can become quickly life threatening (within a few hours). Adrenal crisis is not uncommon in those with adrenal insufficiency.
It sounds as if you have adrenal insufficiency and are becoming more unwell, with the very real possibility of severe adrenal crisis. Please seek immediate medical attention if you don’t improve and certainly if you get worse.
Unfortunately, raising steroids again is the only way to immediately stave of adrenal crisis so please do this if you remain unwell. As other have said, referral to endocrinology for help with steroid weaning is the safest option for those with adrenal insufficiency (some have to remain on low dose steroids for life).
Good luck and please let us know how you get on xx
The symptoms you have described are extremely worrying. Any new sudden, severe symptom is a cause for concern and I would urge you to contact your doctor or consultant as a matter of urgency. As others have described, there is the possibility that your symptoms could be indicative of an imminent medical crisis.
Please remember that the experiences and thoughts shared by members of the forum should not replace your relationship with and the advice you have received from your doctor or consultant and it is very important that all new symptoms are reported to a medical professional.
Agree with everything everyone else has said . I’ve been on steroids for 40 yrs and now have adrenal insufficiency. The medics always want to get you down to zero steroids but sometimes you have to stick to your guns and stay on the optimal low dose for you.Endocrinology is also the place to go.
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