I am suffering from adrenal insufficiency. My rheumy said I have to tough it out. Long term steroid use since 2012. I am exhausted can’t do daily activities. I am on 14 1/2 mg now. Have to decrease 1/2 mg every 2 weeks. Missing my grandsons fiancé s bridal shower. Had to cancel a booked vacation. My son has a baptism next Sunday. What am I to do? Barely functioning. Has anyone gone through this . He said it could take a year for my adrenals to be restored
Adrenal insufficiency due to prednisone tapering - PMRGCAuk
I don't agree with his opinion at all. If you are at 14.5mg/day adrenal insufficiency should not yet be a factor - not until below about 10mg. And if you are that unwell - he needs to slow down your reduction until your body catches up.
If it were me I woud 1) find another more reasonable rheumy who treats the patient in front of him and not the IMAGE he has of you and 2) find a good endocrinologist who will work with a rheumy to achieve the best result for you.
PMR Pro perhaps this is an issue related to the bio-availability of prednisone?? As you know, I'm suspicious that the fatigue I experience below 12 mg may be related to this issue.
Also, if I understand some of the literature I've read, the minimum physiological level of cortisol can also vary and range between 5 and 10 mg.
These two factors can certainly confuse the matter.
I'm sorry, but what is the bio-availability of prednisone?
I agree wholeheartedly with PMRpro!
On that level of Pred. your adrenals will not be working- they don't need to.
The Fact that you are unwell is more likely to be either that there is something else wrong with you or you are tapering the steroids too fast and your body is in withdrawal.
Have you had PMR since 2012? (I have too!) I am still on 11mgs. and not been able to get below that all this time without flaring. You may be like me!
Are you in UK? you probably need to find a Rheumy who understands long term steroid use- this one obviously doesn't!!
Wow, Was beginning to think I was the only one on the prednisone so long. Started 20 mg October 2015 bumped up to 60 December 2015 after biopsy for GCA. Not been able to get below 10 mg without flaring. Sometimes barely even get out into bed and show hard to walk on Some days. Going for a total hip replacement Thursday, I hope this isn’t going to set me back again I know they are going to increase The prednisones which has caused diabetes but not insulin dependent. Although say I may be on insulin coming home from the hospital as the prednisones increase will probably raise my sugar even more while in hospital. . Will keep you in my prayers and it is nice to know that I am not alone in this long long battle of steroids.
Some found they were able to reduce once the hip op was done - it was as if the PMR had fed on the OA pain.
It seems that your rheumy is none too sure about the definition of adrenal insufficiency. If you are on 14.5mg the steroids will be producing lots of cortisol, normally more than your body would actually need. In fact I would be very worried if a rheumy had diagnosed adrenal insufficiency in such a situation and would drop them immediately. When did you last feel OK? How much pred were you then taking?
I believe the rheumy is playing sleight of hand or is totally stupid. S/he may be scaremongering you into reducing as fast as they want. You seem to have had a good dr in the past sometime (i had a quick look at your previous posts to get a context). Have you still got contact with that dr? If you have then perhaps seek guidance from that doctor.
I would try to take a few deep breaths and try and rest for things you want to do. You have far more experience than me of living with PMR and must have developed some good coping strategies. Hopefully you have been reassured by the previous messages about adrenal function and pred and can draw on that experience. I hope you can attend your event. Best wishes. 🌻
I’m a bit confused by your doc, because at 14.5mg you will not have any adrenal function at all; there’s still too much cortisol in your system for them to wake up yet. They really should be looking into why you are feeling like this.
Do you mean FOUR and a half milligrams?
No 14 1/2 mgs
You are so right
You've been yoyoing a bit with your dose and maybe it's because every time you've attempted to taper your doctors have hurried you along and you get bad pred withdrawal symptoms. The fast taper you've been advised to do this time is not likely to work, is it? What's the lowest you ever got and still felt like your symptoms were well controlled? What happened next so you had to increase your dose and start over? Do you have any other symptoms now besides the "deathly fatigue"?
You wouldn't be the first person to increase your dose for events like you describe. I recall increasing from 15 mg to 30 mg for a wedding in Germany and felt great during that overseas trip. That worked so well, I did the same thing a year or so later for a vacation to Yellowstone National Park---even with hiking and climbing I felt great during that trip as well.
In my opinion, it has everything to do with adrenal insufficiency. Your body requires more cortisol for stressful situations --- the stressful situations can be both "good" and "bad".
Your body would normally regulate your cortisol levels---higher or lower--- depending on the situation. The mechanism depends on healthy adrenals and is very complex. Long term corticosteroid use essentially shuts down your adrenals and puts the entire mechanism in "manual override". That puts you at the control of your cortisol needs.
Cortisol plays an important role in a number of things your body does. For example, it:
Manages how your body uses carbohydrates, fats, and proteins
Keeps inflammation down
Regulates your blood pressure
Increases your blood sugar (glucose)
Controls your sleep/wake cycle
Boosts energy so you can handle stress and restores balance afterward.
Taking excess cortisol is relatively safe. When you take less than your body requires...the symptoms will likely be pain and fatigue or worse. How you distinguish these symptoms from PMR seems impossible to me.
I have been on 10-20 mg of prednisone since 2000 increasing to higher levels, up to 40 mg, to allow me to go on strenuous trips - 2-3 weeks rowing / paddling whitewater rivers once a year. In 2000 my base level was 10 mg. By 2008 my base level was 15 although it was taking longer to taper from 20 to 15. I was on opiates at times - the prednisone allowed me to keep the pain medication to a very low level. In 2015 I was evaluated in a pain clinic (5-6 specialists) on my opiate use. The doctors agreed that my use of pain medication was too low to be of concern but were very concerned with my prednisone usage. The doctors insisted that I reduce my prednisone from 20 mg to 10 mg in 2 weeks. The doctors were only experienced with opiate addiction. I knew from experience that I couldn't reduce that fast but decided that I would try to go from 20 to 10 in 2 months. I had tapered many times with no problems but 10 mg was too low and 2 months too fast. I got down to 12 mg and collapsed. I went back to 20 mg but have continued to go downhill since then. I tried to reduce very slowly to 15 mg several times and even managed to stay at 15 mg for a few months before I gave up and went back to 20 mg.
When I reduced to 12 mg I was in considerable pain and couldn't force myself to exercise as normal. I lost considerable muscle. The joints in my body have considerable damage but the muscles kept everything in place and working with pain in acceptable levels. I was never able to stop or reverse the damage caused by reducing the prednisone to 12 mg in 2 months.
My doctors were critical of my using prednisone to allow me to live a normal life with very minimal use of opiates for 15 years. I was able to do the activities I enjoyed for 1 more year for a total of 16 yr. Physically I have aged 20 years in the last 3. I can barely walk. Most days both arms and hands hurt when I move them. I just want to sit still. The pain specialists now tell me that the only recommendation - solution they have to offer me is opiates. Most days I am exhausted, my mind in a fog. I am able to do things for 3-5 hr / day. Grocery shopping is a major effort.
My doctors were telling me that I needed to rest - pace myself back in 2000. If I had listened to them my life would have stopped then. They refuse to accept that quality of life is more important to some than quantity.
At least for me, if using prednisone allows you to stay very active - live a happy normal life that is the right decision. Do not allow a doctor to push you into reducing your prednisone too fast. You may not be able to recover. Most doctors are not familiar with tapering prednisone and are not familiar with how slowly it needs to be done. They don't understand that sometimes you need to go back up.
I agree with you 100%. My back would feel better at 10 mg, but struggling at 7. They always want us off so bad, they don’t care if we cannot do a damn thing but sit. Cold damp Spring here in Michigan, USA, is really causing inflammation in my body, I’m ready to put myself up to 10 until summer comes! I’m 69, and been on Prenisone for 8 years. It’s either increase my pain pills or Prednisone!!
Hey fellow Michigander! Spring is tough on me too! I spent 3 winter months in FL and returned to MI at doc & rheumy’s insistence March 1st. Fell and got a concussion within 5 minutes of being here. Trouble ever since with tapering! I’m up north, per se. Dx in Oct 2018 with GCA. May need a new rheumy. Do u have an excellent one? I like mine, but UofM specialty center in Brighton is out of my health plan’s network. Grrr. Good to see you here, but sorry for the reason! 😉
I have been on steroids since 2014. Currently on 13mg. Had flare on hols in March when was on 10mg and I increased to 15mg which had an immediate improvement to my flare. However since returning home have been to my new Rheumatologist and she was not amused at my increase and unrealistically would like me to reduce at 2,5mg until down to 7.5mg when I see her next. I told her I struggle with 1mg reductions and the consequences of her reduction would be another flare with no quality of life. Therefore I have ignored her ridiculous suggestions and visited my GP and informed him of my plan for tapering. He also added he would probably have recommended same increase on hols that I decided on.
Perhaps you do need to increase your steroids too in order to function and give you some quality of life instead of missing out on so many important events. Speak to your GP too and explain how badly you are feeling.
I too have a good GP as it seems you do, or is it just sensible. In the early days of my GCA the rheumy had me reducing too quickly and i suffered for it. My GP, who admits he didn't know a lot about GCA/PMR was absolutely fine with me tapering at my own speed. I think it encouraged him to do some reading!!
I have to say though, that my rheumatologist is much more forgiving about my doses now. I was down to 6mg at my last visit but was not really very well..a combination of a virus and other things, so she upped my dose but I increased it further back up to 10mg for a few days. It helped. I am now reducing again and have a 6 month appointment by which time I hope to be down again. But we will see.
Cannot understand this at all. After a little over 4 months I am down to 2.5mg. this is fast, but have done so because of eye-prednisone problems. It is not easy, however, I understand that after 8mg my adrenal glands should be starting to become active. I am getting enough sleep each night without really bad pains, sometimes a little discomfit in my legs or shoulders. The main thing I notice is that by after lunch, I am pretty much wiped out. In the early mornings I do my housework and/or take Lily to the park for 3/4 to an hour, play for her while I walk. We all have to find our own way. I've been tapering on my own as I have not seen doctor for over 2 months, but will visit him in June. In the meantime, I am concentrating on anti-inflammation foods/spices etc. and exercise. Of course we all have different thresholds of pain. Perhaps, I am willing to put up with more discomfit etc. because of fear of having further problems with my eyes. Perhaps I am just stubborn/strong willed For the last 6 days I have had to deal with a stray puppy. I may at last have found someone who will "foster" her. It has been a very interesting week to say the least. Hope you get to feeling better. I wake up each morning glad I am here and can hear the birds singing and the dogs thumping their tails.
I have the same symptoms as you. I am down to 4.5mg of Prednisilone. I still feel not enough is understood by professionals regarding this whole subject. I'm trying to ride it out but it's exhausting. Sorry not to be more positive.
Hi. Like everyone else I'm not sure how the rheumy thinks it's adrenal insufficiency at such a high dose!!! Your adrenal glands will be asleep at that level and won't even start to recover until you get to a much lower dose....THEN you may be diagnosed with insufficiency. As someone else has suggested, have a chat to your GP. It sounds like you are reducing just too quickly and to be honest should maybe increase a little to get you through this time. My GP has been really understanding and allows me to reduce according to how I am feeling and he is the one who prescribes my pred. Although I have to say my rheumy has become a lot more flexible too!! I have been on pred for just over 4 years now. Good luck.