Sorry in advance that this is such a long post. Thank you for your consideration of my dilemma. I really value this wonderful forum and the expertise and experience of you all.
The journey so far. Diagnosed GCA in July 2023. Had previously months of headaches, malaise, back to back frozen shoulders, some odd sudden onset of acute joint pain. Blood tests showed elevated ESR and CRP. Temporal Artery Biopsy came back positive.
On 60 mg of Steroids for two weeks. Developed significant muscle weakness, dizziness and had times of altered consciousness. Very scary! Ended up in Cairns Base Hospital after seeing Rheumatologist who wanted to be sure symptoms were not due to anything else., Was taken cold turkey off steroids. Horrendous crash in blood pressure, and very frightening to have the sensation of impending death. Was monitored cardiac wise and lots of scans and tests to make sure there was no other involvement of arteries. Was reinstated on Prednisolone after half a day, but on 25 mg. After three days sent to local hospital to rehabilitate. However, became weaker still and developed alarming tremors affecting head, and whole body, double vision and was diagnosed with Persistent Postural Perceptual Dizziness. Needed wheely walker and assistance to go to loo. Taken again cold turkey from 20 to 0 g to see what effect it would have on my persisting headaches and all the other symptoms. This time not as scary but I was also very careful to not do anything. Put back onto 15 mg of Pred. Eventually discharged a month after first admission. Diagnosis of reversible Steroid Myopathy. Still weak but able to walk independently now. Since August I have been able to steadily improve my walking stamina back to pre- Steroid levels but with some tendency to fatigue in my quad muscles. Rheumatology follow up appointments were held at monthly and then slightly longer intervals. Ophthalmology tests have been very good, but some blurriness of vision due to fatigue is ongoing. Double vision resolved with some gaze stabilisation exercises and a reduction of the Pred.
Fast Forward to the end of January this year. The Rheumatologist was very happy with the ongoing normal blood tests and absence of any GCA symptoms and put me on a rapid taper. i.e 1 mg every week until I reached 5 mg and then 1 mg every two weeks. I was very doubtful that this would be wise given my extensive reading on this forum. However, I was said nothing and felt I should give it a go, given his reassurances that I was young and had only been on the steroids for six months or so. All did go well until about 6 mg and then by 4 mg I was breathless, light-headed, fatiguing and had palpitations. After a week of this intensifying, I rang the Rheumatology clinic leaving a message outlining my situation. The clinic nurse rang back to say that I should go up to the last dose I felt ok on and to stay on that until my next phone consult at the end of this month. I conservatively picked 7 mg as an OK dose and immediately felt much better. I had three or four days of feeling much better but now have felt back to square one with the periods of fatigue, light headedness and palpitations. I started to get some slight left-sided chest pain as well as general chest heaviness yesterday. I presented to the ED of our local hospital and they checked me out for an pulmonary embolism and any other cardiac nasties. Everything tested fine. I returned home after 5 hours and am now left with the dilemma of what to do next. Do I just exist in this horrible state where I am largely incapacitated unless I constantly rest, or do I go up a little bit more to perhaps 10 mg? I am due to fly solo in four days time to visit my Mum for her 80th. I can’t see myself doing all that is necessary in my current poor state of health.
Written by
Leafsong66
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What a nightmare. It is sounds like you are repeatedly being tipped into adrenal crises. Do you know much about adrenal function? If not the essential reading is in the FAQ’s here under A (obviously) and contains the explanations. Although you were on 60mg for just 2 weeks and in theory able to just stop, for some that could be enough to shut the adrenal glands down more solidly than if it were just 10mg. Your symptoms sound like classic adrenal crisis which can be life threatening. Normally when we get to below 10mg our adrenal glands that have not needed to bother producing cortisol, need to start working. If like me they don’t one feels dreadful. The tipping point dose varies between people and at some point (usually about 7mg) the dose is still high enough to suppress the adrenals but still too low to cover your daily life’s needs. Until the dose is low enough to trigger your production, it can be hard going.
Your symptoms on 60mg sound like mine in that I had to move in slow motion because my muscles went off line even before they wasted away. When the Pred was at peak blood level it was as if I was drunk with no coordination or stability. My heart raced, my head was zingy. I was also off my head with anxiety and racing mind. This acute bit lasted a few hours until the levels dropped. I took it a bedtime to get over the worst. Regards the constant dizziness this was an issue too and my eye muscles couldn’t adjust quickly enough to cope with changing depth of field easily or focusing on anything I was walking past. I felt constantly dizzy and light headed. This started to get better somewhere under 30mg. So, yes I was incapacitated but left to get on with it and I just saw it as par for the course but nobody, but nobody I saw warned me. Even when I told them about it, they just looked as if it didn’t compute. My high street optician was more help in saying my eye muscles would keep changing until much lower doses so prepare for wonky eyesight but that was fine as long as the eye pressure was ok. He tested this every 3 months.
With your chest heaviness etc. a PET scan might be an idea to rule out large vessel involvement. I have no idea what they think is going to happen if your GCA is active and your dose is too low. Are they considering a steroid sparer drug?
Thank you SnazzyD, Pred is such a powerful ally and enemy all wrapped up in a tiny white pill! Thank you for sharing your powerful story. It’s dreadful how we are left to muddle through these terrifying symptoms.
I find your rheumy is a tad cavalier with his messing about with pred in a patient with biopsy proven GCA! The first time he was risking your sight and this last time he was risking an adrenal crisis (again). Some people get into the adrenal insufficiency mill sooner than others. As I just explained somewhere else, some of us only absorb about half of the oral dose while others get 90%. Obviously if you are a 50% person you are getting a LOT less than it appears. It is why slow tapering is essential. GCA doesn't go away in 6 months - whatever your rheumy thinks. You are symptom-free because you are on enough pred, reducing it opens a right Pandora's box, it pays to be very cautious.
Me? I would try at least 10mg and book airport assistance, You can rest with your mum - but you really want to be there don't you?
Thank you so much for your considered reply. I intend to go up to 10 mg tomorrow and swallow my pride and book airport assistance. Thank you for all of your support to this invaluable forum.
Nothing to do with pride - I have requested it for some years so I arrive at my destination in a human state!! Laterly both of us needed it as OH couldn't keep up with the pace of the wheelchair drivers! I have been delivered to my car in the multistory parking or the bus station for a transfer. Beats dragging a case and wondering how much further it is. And when something goes awry, they help you out.
Saying 'pride comes before a fall' - could be quite apt with PMR, or GCA or osteoarthritis.. Having had second and still have third... I don't led pride get in the way.. 😊.
No one tells you how brave you are as you struggle along...
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