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

Your attitude is fantastic. I wanted to share about a friend of mine with GCA....she rode the roller coaster for years, like all of us, with either PMR or GCA. She got down to 1mg per day and could not stop that without some visual issues. She has been taking 1mg per day for 22 years now, but it works. Personally, though, I've been on mega doses over the years and am now at 3mg...I hope to get to zero, but I hope to get to remission more than -0-. I would do it if I had to take a few mg each day along with Actemra to have a good quality of life.
I know it is a personal decision; I just wanted to share.💞

May I ask why you decided to discontinue the use of prednisone?

many reasons...my teeth all fell out, my hair on one side fell out and continued all over till now it is very thin, I stopped dreaming, 2/3 hours of sleep per night, I felt nothing about anything, no passion, I was like a zombie, I lost interest in things I had always loved, My character started to change to real impatience, anger, irritability...and terrible headaches for days. I lost my imagination which kept me alive (I am an artist and have been working like an automitan.... no inspiration dull and mindless) and was my modus operandi, my profession and ever lasting love, reduced to automatic pilot..My career greatly suffered... I lost a lot of my contacts and friends due to inaction... There are other contraindications which I do not want at all, which I hadnt realised really matter to me also, like Prednisone hinders healing, cancels the adrenal glands (I am working on building my adrenal glands up again and it will take a while, but anything is better than the helplessness I have been experiencing)
These are not life threatening in a physical way but caused me to be utterly depressed about my life to the point of giving up...It took a long time to get down to nil...but I bit the bullitt in February and even tho' the pain has come back tenfold I know what to do and am seriously working on healing myself.

My heart goes out to you for what you have experienced and are going through now. Were you diagnosed with PMR or GCA, or both? It is depressing....I was one hopping 78-year-old busy, busy, busy. I did what I wanted when I wanted and painted as much as I wanted..went to lunch..went shopping... one night, I became blind in one eye and had a painful body and tons of pred and Actemra to save my other eye.
To get past it, I held a mental funeral for life as I knew it and began to work around my illness instead of against it. Really tough....but I would have done anything to keep my right eye.
I honestly get what you are saying...but make sure you aren't jeopardizing your vision... I hope not for sure..but check.💞

oh it is pretty awful but i was so ignorant and didnt get the help I asked for. I am only diagnosed for PMR ...I didnt have enough 'points' ? for GCA so they decided not to pursue it. I am stuck with them here and cant get a second opinion. I am organising a Private Rheumatologist in London so we shall see. I dont know if my hatred of steroids has created an even worse condition now. It has caused me to have Osteopoenia and that is definitely steroids to blame.
My heart goes out to you too...I had an ok existence before Prednisolone and its friends came along... I think I would have been better off healing myself!!

Please look at Low Dose Naltrexone and if you are in England it will be easier to get there than in the US. Life will look better on it, I assure you. Best wishes.

I'm thrilled to hear you will see a private rheumatologist; I didn't realize you lived in the UK. On the HealthUnlocked.com forum, which I also belong to, I've come to understand the obstacles you face in the NHS system. We have them in the States too!
I know some folks, including me, are concerned about being on steroids. I, too, have osteopenia and a few other things from being on prednisone for three years. But, it is a choice I made because I knew I would not get better and my life would not get to near normal without them. It is the same for you. I cannot advise you, it is not my place, and I have no medical degree. When I weighed the side effects against the quality of my life remaining the same...I chose prednisone. Only a few months later, I had to decide whether to take Actemra as well. Once again, quality of life won. The first year was a roller coaster; pred is not a magic bullet. My life has improved steadily over the last two years.
I have so much compassion for people like myself, you, and many others faced with treating these autoimmune diseases. My motivation for being on these forums is to try to help in some small way by supporting folks and reassuring them that life does improve. I now have enough pain-free time and energy to pursue my painting.
We are the only ones who can make these decisions for ourselves. Please don't feel you were ignorant~I'd never heard of these autoimmune disorders~I'd been in and out of hospitals since I was four with one thing or another, and there was usually a fix! Autoimmune was a game changer, but @em2, you now have the chance to choose.
I wish you all the best; keep in touch.💞