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i have come off steroids after 11 years, am finding it very difficult
Polymyalgia Rheumatica (PMR) | Last Active: May 27, 2023 | Replies (17)Comment receiving replies
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 ....
Replies to "This is for @dadcue...... thank you for most interesting information. I am going to see 'my'..."
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.💞
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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.
https://journals.lww.com/claojournal/Abstract/2001/27020/Neurotrophic_Keratopathy.9.aspx
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!