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.
15 yrs of PMR , now it’s fibromyalgia 
too much going on - how much to taper after last flare?
Advice with flare up?
Tapering and side effects
Steroid taper after a GCA flare
