I have Ankylosing Spondylitis, but was initially wrongly diagnosed as Polymyalgia for 5yr. I was put on steroids Dec 2012, and every time I try to get below 4mgs I get symptoms of steroids struggling. He feels I may be steroid dependant, but insists we can’t take bloods to check as still on steroids.
Does anyone else have steroid dependency?. If I do how do I manage stressful days if adrenals aren’t producing enough of their own cortisone 😏. Are you meant to adjust dose at difficult times like stress or infections? Would it be worth asking for referral to endocrinologist to try hydrocortisone? Just so confused, don’t see Rheumy for 6 months now. He just suggested keep Prednisolone dose as low as possible. Any advice would be appreciated. I’ve been trying to reduce from 4mgs for 14 months now 😏
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Runrig01
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Kindly consider checking with Stacy ( healthunlocked.com/nras/pos... ), Maureengibson. 😌 Stacy went from 60mg to 40mg of Prednisone down to 5mg of Prednisone 😳 believe it or not. 🤯 Very best wishes to you, MG. 😌 🙏 🍀 🌺 🌞
Oops . . . See her in video linked to on page: healthunlocked.com/nras/pos... 👍👍 (Long, slow process. Doable, but takes time . . . ⏳ ⌛️. . . ⏳ ⌛️. . . patience, perseverance.) 😌 🙏 🍀 🌺 🌞
Amazing story, but I’ve got to similar situation with Prednisolone at 4mgs, and needing advice on “steroid dependency” diagnosis and how to manage it. But well done to Stacy making such remarkable progress. I have slowly tapered my Pred over the last 5yrs but am now stuck in a rut. Even the dead slow nearly stop approach has not prevented adrenal insufficiency symptoms sneezing in 😏
Understood . . . understood, MG. 🙏 😌 With same techniques used to inch down from high mg. to lower mg. to finally breakingdependency is same techniques (I suspect) + ‘more time’ when we hit that plateau — get "stuck in a rut" — from what I understand. There may be additional tips & techniques as well that take into consideration "adrenal insufficiency"? 🤔 My (over?) simple layman’s understanding is it’s the last bit that can be the hardest (& take the longest). 😳 I suspect there are techniques to get through it (adrenal insufficiency). Can you connect with Stacy? 🤔 Maybe via the ‘Comments Section’ of the video? 🤔 She may have tips/ insights that address ‘adrenal insufficiency’ concerns? (For her to make such tremendous ‘leaps & bounds’ improvement is an indicator of her depth of experience/ knowledge that perhaps couldn’t be fully detailed in just 1 interview.) 😌 🙏 🍀 🌺 🌞
Jennifer ( paddisonprogram.com/reversi... ) & Lizette ( paddisonprogram.com/no-more... ) & quite a few others have totally weaned off steroids & more are lowering it as well. Consider poking round the videos/ audios to pick up additional tips straight from the horses 🐴 🐴 🐴 mouths 👄 👄 👄 . [Have found it immeasurably helpful to follow tips from folks who’ve actually achieved the goals I sought/ seek to achieve. 👍👍 Their 1st-hand experience speaks volumes. 😌 🙏 🍀 🌺 🌞 ]
(Very welcome, MG. 🙏 😌 ) Please don’t hesitate to try to reach out & connect 👉💥👈 with these folks sharing their experience. They’re paving the path (forerunners) to where we wish to be. 👍👍 We (I) learn 👩🏫 much from them. 🙏 😌
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I know this goes off topic, I haven't followed your history too well, just quite staggered by the fact that you were misdiagnosed (!) . How come you reverted back to steroid after biologic was offered to you, presumably for AS? If it's okay to ask, of course. I have known someone, a teacher, with spinal AS. It's. A very difficult condition to live with.
I’m still on biologics started February last year. My misdiagnosis if Polymyalgia went on for 4yr and I was commenced in steroids then. Although I am on all the correct meds for my AS- biologic, Methotrexate and Arcoxia, I have been trying since diagnosed with AS in Nov 2016 to get off the steroids. I keep developing worrying symptoms when u go below 4mg. I get frequency of urine, nausea and loss of appetite, intolerance if heat, fatigue, craving salt - all symptoms of struggling adrenals. So my Rheumy now thinks after 5yrs on steroids I am now steroid dependant. I hate the idea of remaining on steroids for life, but if so could do with advice from others in my situation and stuck on steroids. Sorry for the last big winded explanation 🤪
Not at all, I appreciated the details as a patient. I'm sorry to hear about the situation, which isn't exactly unfamiliar to patients ourselves. Did your consultant order MRI for your joints whilst you were misdiagnosed with "Polymyalgia"? Those symptoms you describe could well be symptoms/side effects of DMARD/biologics? There have been some active discussions re. side effects on the long-term use of DMARD if you have multiple chemical sensitivities many of us do seem to suffer from.
To be honest, using steroid long-term to "cope with the stressful situation" sounds like you might well be "dependent" if not physically, but psychologically, at least (?). It's a topic, which has surfaced on the forum, too, lately. The steroid could have a disastrous effect (as you know), hence the trend is moving onto DMARD as we're all aware. It is freezing at the moment, I can see why you feel the need for a temporary steroid increase, such a difficult time for struggling joints.
I had MRI of spine before Polymyalgia diagnosis. These symptoms were also occurring before starting DMARDs and biologics, so don’t think it’s that. I haven’t increased dose for stressful situations, just putting it out there to ask if I am truly steroid dependant do I need to increase. As on busy stressful days I get the heat intolerance, nausea and problems concentrating return, and wonder if that could be why? So I don’t think I have a psychological dependence as I’ve never increased, just need to know if that is required if my adrenals aren’t functioning well enough
"As on busy stressful days I get the heat intolerance, nausea and problems concentrating return, and wonder if that could be why? So I don’t think I have a psychological dependence as I’ve never increased, just need to know if that is required if my adrenals aren’t functioning well enough"
Have you looked at the side effects profile/list of both of these rheumatic drugs? Many people *assume* these cannot be side effects. Even if these were listed under the common side effects, people are hesitant to consider. My consultants never brought these up and we are not used to checking the side effects paperwork, which usually get thrown out as soon as the packet is opened. 4mg steroid is a very low dose. GP would happily increase it. If steroid increase is required due to the adrenal gland, packing up, there must be a diagnostic test. Working with AS isn't easy. In fact, it's full of challenges. Heat intolerance/nausea/cognitive issues could be drug side effects as well as symptoms or even BOTH. Take care.
As I say these symptoms were an issue prior to starting my DMARDS and biologics in Nov 2016, so do not think it is related. These symptoms have been occurring whilst only on Prednisolone for the 4yrs prior to DMARDs and biologics
I know, hence I mentioned "both". This neuropathy link (not perfect, I know) explains that medications could existing symptoms worse. The logic behind this is that you have got vulnerabilities in these areas and side effects manifested in these. It took a while for me to "get" this. The only way to find this out is tapering under consultant/GP to see if these "symptoms" may ease off. Remember all drugs have side effects. I spent 12 months with major side effects without realising it was the drug I was on. These drugs could make your thinking less sharp, too.
I’ve on Prednisilone since September 2013 when I was initially diagnosed. One can make huge downward steps if it is done quickly - ie: over ten days, but it does problemTic if one stays on them any longer. I inject 25 mg Methotrexate, and have tried various other drugs. They won’t try another until I’ve had an angiogram ( that’s another story). Unless I’m flaring when I have to go up to 7.5 or even higher, 10mg or 12.5 mgs.
My rheumatologist said that my adrenal glands have probably packed up for good now. In order to replace the natural Adrenalin that they produce, I would need 2.5 mg. So another 2.5 is minimal . I know they aren’t good for one, but they enable me to move. I’d rather die dancing than lying in bed in agony.
You refer to an injection of corticosteroid, but that is still steroids. Perhaps I’m being thick. J
Not sure where you read injection of steroids. The only injection I get is my biologic- Benepali. I have had occasional steroid joint injections in the past, but am fully aware they still have same effect and side effects.
What I’m really trying to understand is do you have to top up your Prednisolone if doing anything stressful to cope for the adrenals not producing more at times it’s needed
Hi,I'd feel ok if I was on 4 mg, think it's a pretty safe dose. However totally understand why you'd like to get off if poss. I'm still in between 6mg and 7.25mg. ... symptoms just flare up badly any lower. I managed 5mg for a couple of weeks when everything was good..Anyway, my doc thinks maybe to try having a steroid jab then try reducing dose to 2.5mg so will give it a shot. ( next week) Also think seeing an endocrinologist might be a good idea to measure adrenals. ( im going to)I'm currently on benepali, would class myself as a partial responder... without it would be in a wheelchair I think..but still have pain....going to give it some more months then maybe change to a different drug.. good luck
Hi sweetie I was on prednisolone for a few years and very dependent on them. I did manage to reduce them very slowly by breaking my tablets down a little bit at a time. However it did take me a long time to come off them. I fractured my spine in 4 places due to the prednisolone and I am on the border line of having osteoporosis. It does take time but it can be done and to be honest it’s not easy as I missed having all the energy and I was free off pain. However now they won’t give me any steroid unless it a infection for a Pacific areas. I wish you lots of luck and you will manage it in time. Take good care of yourself and keep lovely and warm. Love and hugs 🤗🤗🌹🌹😘😘🤞👍
I hope so. I have even tried the slow approach, which is just reducing 1 day each week, so that by week 7, you have dropped 1mg. Even that has failed. I know it’s a slow process, I’ve been doing tapering for over 5yr now. It’s taken a year trying several times to get lower than 4mgs and failing each time 😏
I have been on predisone for 24 years.I am currently on 2.5 mg.but have been on higher doses for flares.I have tried going on off pred a few times but had to go right back.last year I asked to try to go off once more .I was told its too long and no I have to stay on them.
Did you get referred to an endocrinologist or was that a decision taken by your Rheumatologist or GP. I am concerned about being left on them without it being investigated as to what my adrenal function is. I’ve also read it can be helpful to switch to hydrocortisone, did you get to try this? Thanks for your input 😁
After numerous medical problems I eventually got referred to an endocrinologist. They have tested my body’s own production of steroids and it is virtually nil . I have been told I will be on hydrocortisone for the rest of my life.
The good thing is the endocrinologist has given me invaluable information that stops me from becoming very ill.
Yes you do have to take extra doses in certain situations even injections. For me The endocrinologist was invaluable push for a referral ask them to test your bodies steroid output
Thank you. This is exactly what I’m lacking, any information at all. Just increase and try again. Even during winter with serious infections and struggling, gp would not let me increase a little, just said don’t reduce till you feel well again 😏
I really struggled tapering and eventually coming off long-term steroids and it took a very long time. The only thing that worked for me was having packets and packets of 1mg and 2.5mg (I too was stuck at 4mg). Obviously everyone is different, but what worked for me was to go from 4 to 3.5 for at least a month, 3.5 to 3 for minimum another month- 6 weeks etc (and going back up .5mg for another couple of weeks if I had to).
The last mg I got over by having an intramuscular hydrocortisone injection in the bum which lasted for about 3 months and at the end of which meant my adrenals had somehow re-set themselves.
For me there is a world of difference in the efficacy of steroids injected vs steroid tablets (and not to be confused with steroid injections into joints which is a whole other scenario!) and the weaning off. Now, if I flare, I see the Rheumy nurse (usually within a week) for a shot in the bum and it's usually enough to see me through. I would do anything to avoid going back to long-term oral steroids because coming off them was such a saga - as well as all the other symptoms of roid rage, weight gain and moon face.
Meanwhile I think it's a great idea to see an endocrinologist (nothing to lose). Good luck X
I was on Azathioprine + Pred + HCQ. As the Pred was tapered I struggled big time. It was thought that I was very sensitive to the steroid drop. I was dropping 0.5mg Pred/month. So my Rheumatologist said that when I hit 5mg of Pred I was to have a Short Synacathen test. Basically your body is put under stress to see if you adrenals kick in.
I did not have the Short Synacathen test in the end as it turned out that the Aza was not working hence I could not tolerate the minor drops in Pred. I was moved on to MTX and Pred tapering issues disappeared.
Just in case you want to know what was supposed to happen in my case ........
I don't know all the ins and outs because as mentioned I never had it in the end. I did ask my Rheumatologist to explain what the process involved.
Basically he said, and sorry I don't remember all the details as it was a couple of years ago. When I hit 5mg Pred I was to pick up a prescription for hydrocortisone (HC). I then had to stop taking Pred and take the HC for I think a couple or was it 5 days, not sure. I seem to recall you took the HC 2 or 3 times a day, dosing was completely different to Pred. Then after a couple of days (or 5) it was a trip into hospital where you were given a shot of adrenaline which sets up the 'fright or flight' effect and then bloods are taken at intervals to see if your adrenals kick back in.
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