i have come off steroids after 11 years, am finding it very difficult

It might be a good time to suggest to your doctor that having your cortisol level checked would be a good idea. A low cortisol level can cause you to have low energy along with aches and pains.

There isn't much they can do for secondary adrenal insufficiency caused by long term prednisone use. Your adrenal function should improve with time. Sometimes adrenal function doesn't improve and for this reason your adrenal function needs to be checked and monitored.

A referral to an endocrinologist might be needed. If you need corticosteroid replacement treatment, hydrocortisone is preferred instead of prednisone.

I got off prednisone after 12 years of treatment for PMR. I never would have been able to taper off prednisone except that a biologic called Actema allowed me to stay on a low dose of prednisone for 6 months. Actemra kept my PMR symptoms in check a Actema doesn't suppress your adrenal function like prednisone does.. My adrenal function improved after 6 months and an endocrinologist told me when it was safe to stop prednisone.

My symptoms of adrenal insufficiency didn't improve for more than a year. It was very difficult but my symptoms did slowly get better.

Though my problem is GCA I think the same factors apply when it comes to being off prednisone after long-term use. I would certainly seek the advice of an endocrinologist or your rheumatologist to get an alternate treatment for your continuing pain. I rather think that fatigue is always with us to varying degrees. You do very well with your walking and steps~! I bet I don't do 3000 per day ...any day.
I am on 3 mg per day now but experience issues with equilibrium as well...and I am a painter too. Such a wonderful escape for us. Could it be vertigo? I'm not a doc but would continue to look for answers since I don't believe you need to be in so much pain. I wish you the best.💞

thankyou for your reply . Are you better now back to normal? I spent years going from 8mg of Prednisone per day and down to 3mg then up again then down..I then had an eye scare and they put me on 60mg for a month which didnt help and my eye slowly got better..After that enormous raise of steroids i decided that had to be it and i tapered off down to 2mg taking 12 days. Then I had a double fracture in my foot which took 6 months to heal (probably caused by the steroids). So in February having reduced to nil i came off the steroids. All of this since September. I had not heard of Actema ..so shall see if I can get some help.

Thankyou. I shall take your advice and find another way. I have had little help from my doctor or the rheumatologist..so I am going to find another. It took me so long to know what to do as I felt so debilitated by the steroids (all my teeth fell out and half of my hair but worse than that my imagination went I stopped dreaming and felt my character was changing) and my doc, who made me feel I was just needy and was not interested at all in helping me. My rheumatologist who I saw one time in eleven years (my doc refused to refer me) wanted me to stay on 3mg per day but I refused as there are so many side effects for me ....I was seriously going down. I am a bit wobbly too but I was worse when I was on steroids plus terrible brain fog. I feel clearer now but cannot work yet because of pain. Thank you so much I shall get an endocrinologist or rheumatologist to see about the pain. I could handle it better if the pain was not so bad. Thankyou xx

First, I wish to say that it takes fortitude to come off prednisone like that. On the other hand, it isn't entirely safe to taper off so quickly without guidance from a doctor. I want to stress that an endocrinologist may be useful at this stage. Your having problems between 3 mg and 8 mg of prednisone is consistent with a low cortisol level and secondary adrenal insufficiency from long term prednisone use.

An endocrinologist told me when it "might be safe" to stop taking prednisone after being on it for 12 years. She was very adamant that I should take prednisone again for any reason if I 'felt the need". She went into great detail about what I should do if the need for more prednisone arose. She wouldn't predict what would happen because she had no way of knowing. She just said that I could call her directly if I needed prednisone again because she wanted to know about it.

As it turned out, I also had an "eye scare" within a week of coming off prednisone for the first time in 12 years. I also needed to go back on 60 mg of prednisone and that completely demoralized me. I understand that feeling and things were looking bleak to say the least.

My eye problem turned out to be a temporary setback. My ophthalmologist, rheumatologist and endocrinologist all weighed in and provided me some options that didn't involve long term prednisone again.

I listened to all of my doctors. I tried a different biologic for a few months that my ophthalmologist said would be optimal for my eye problem which wasn't GCA. My eye problem was something else that can cause blindness and my ophthalmologist didn't think Actemra would be the best treatment for it.

The second biologic I tried didn't work for PMR as the pain came back and I was unable to taper any lower than 15 mg of prednisone again. My endocrinologist was concerned and said prednisone wasn't helping with my problem with adrenal insufficiency and encouraged me to taper lower.

My rheumatologist finally said that it would impossible to adequately treat everything that was going on. So no, I'm not completely back to normal but infinitely better off than when I was taking prednisone for everything.

My rheumatologist eventually provided me with a couple of choices and let me decide what I wanted to do next. I'm happy with my choice to go back on Actemra again.

My quality of life in much better now that I have been off prednisone for a couple of years.. I have been able to stay off prednisone and most things are improving rather than getting worse.

I 'fired' a physician who 'was concerned about my dependence on prednisone.' I have an excellent rheumy, but this MD didn't get it!! I'd lost the sight in one eye and had no intention of losing the other if I had anything to say about it. Sometimes we have to take charge and be our own best advocates. I'm so glad you are going to seek informed😉specialists. Good for you and keep the great attitude!!💞

thank you so much....we do have to take control...why would i rely on someone who really is not interested.

i wrote a big reply and it disappeared sadly

This is for @dadcue...... thank you for most interesting information. I am going to see 'my' (perhaps) rheumatologist on the 7th of June and wish to discuss alternatives to Prednisone. If it is not satisfying I shall stay with what i am doing alternatively. I do not want any more drugs with new surprising side effects. I take dandelion fresh and make tisanes, also ginger , Korean ginseng, nettle, and have acupuncture once a week. At least I feel a bit in charge where I was not before. I do not now trust my doctors as they only push Prednisone. I shall broach Actemra to them... I did try for years to reduce and at the last count I had it down to 3mg per day for about 2 years before the eye problem and yes the 60mg for that was shocking and demoralising plus it did not do what they wanted. So I was very happy when I got back to 2mg per day and I took 4 months to pluck up the courage to end my dependancy completely. I am still very happy I made that decision even though the pains are terrible. Thank you so much I really appreciate your information ....

May I ask what "eye scare" you had?

My ophthalmologist says I have "interesting eyes" but not in a good way. It all started with a flare of uveitis about 30 years ago. I have probably had close to 50 uveitis flares since then. My uveitis flares respond well to prednisone or otherwise I would probably be blind by now. The vast majority of my uveitis flares have been in my left eye. I don't know why my immune system likes to attack my left eye and not my right eye.

Cataract formation occurred within a couple of years after having several flares of uveitis. The cataract was worse in my left eye so my ophthalmologist said it was probably caused by uveitis and not all the prednisone I took.

Cataract formed rapidly in my right eye about a year after having cataract surgery on my left eye. I reminded my ophthalmologist that I had never had uveitis in my right eye so he conceded that prednisone was likely the cause. I had "premature" cataract surgery done on both eyes long before the age of 40. At least I didn't have to worry about cataracts anymore.

Somewhere during that time I started having "electrical shocks" around and behind my left eye. My ophthalmologist said he couldn't do anything about the electrical shocks and said it wasn't a problem with my eye. He referred me to a neurologist for trigeminal neuralgia affecting the branch of the trigeminal nerve that innervates the eye. The eye depends on innervation to function properly so that caused some problems.

Eventually the trigeminal neuralgia pain got so severe I couldn't stand it any longer. It seemed to be better when I took higher doses of prednisone but glaucoma developed because of too much prednisone. Glaucoma and high blood pressure from prednisone was causing a lot of problems.

My surgery for trigeminal neuralgia severed the sensory part of my trigeminal nerve. There was a large vein tangled up with my nerve that was compressing my trigeminal nerve. The surgeon said he had to "spare the vein" but "sacrificed the nerve". In any case, now my eye is completely numb along with the entire left side of my face. The motor nerve is still intact so I can still smile about it. However the facial numbness and tingling is very uncomfortable.

Having a "numb eye" made my eye worse but at least it wasn't painful anymore. Now the problem I have is Neurotrophic Keratopathy (NK). I will spare you the details but the following link gives you the general idea.

My ophthalmologist is concerned about corneal defects and the potential for a corneal meltdown. He says that wouldn't be good.

I get traumatic forms of uveitis now as compared with autoimmune uveitis. The autoimmune kind of uveitis is treated with prednisone but the traumatic kind is not. Prednisone would increase the risk of an eye infection when my eye is traumatized and that would be the end of my eye.

I have PMR but not GCA ... thank God!