I was diagnosed with GCA just before Christmas. I kept my sight, with just some damage to the optic nerve on my left eye, which also has maculopathy and retinopathy (early stages). The high dose prednisolone (80mg) made all my aches and pains go away, but I felt like a zombie by January, with all of the horrible side effects everyone on this forum describes. Delighted to find this forum and to see that it is not just me suffering. But I was so in denial and really thought that if I ignored the dizziness, tiredness etc. it would go away and I could "work through it", so tried to carry on as before. On Jan 24th I was determined to cook a lovely roast supper for my son's family. Big mistake. I tripped over the baby's toys, fell down and broke my femur, resulting in a partial hip replacement (surgeon worried about the 60mg Pred that I was on, plus diabetes, so did not replace the whole thing).
Since then, things have got so, so much worse. My hip became infected, I spent two and a half months in hospital and now am at home, in a wheelchair, on a vacuum pump which is sucking out all the horrible green slime in my hip. The drugs I have to take are horrendous, having the most powerful antibiotics known to man which make me feel very ill, as well as Pred, now 20 mg. I had a total of five operations to "DEBRIDE" the infection, which have not worked, and so now I have to have two more major operations to replace the whole hip, involving horrible procedures that I don't like to think about! I am a total wimp, terrified of hospitals, operations and everything. I only just last week plucked up courage to look at my wound, which is huge, deep and full of horrible stuff.
I am so scared, I have read that what has happened to me is "catastrophic", even without taking steroids and having diabetes, and the mortality rate is higher for this op than for others, but especially for people with "co-morbidities" like mine! The risk of getting sepsis is huge. I'm trying to look on the bright side, I really am, but as I feel so ill most of the time, and have been in bed now for three months, I get very down. The surgeon wants the steroid dose to go down much more before he operates again, but because of the infection in my hip, my sedimentation rate is too high. So I keep on antibiotics for 4-week stretches, then they wait and see if I get v. ill again, which always happens, so they put me back on antibiotics again.
What a mess! I am kicking myself for being so stupid and thinking that I could carry on as I did before the GCA was diagnosed. Just to let everyone know, the dizziness and wobbling, sweats, tiredness, rages and depression are REAL, I so wish that I had listened to my body and stopped overdoing it. Part of the problem was that nobody really understood how ill I was feeling after I was diagnosed and I did not realise the seriousness of GCA, even when my sight went wonky I still thought they must have made a mistake! Even in hospital the nurses and doctors had no idea! Orthopaedics, rheumatology and opthalmics do not communicate, so I was having to explain all the time why I liked the lights low, why my eyes were so dry, why I kept falling asleep all day and woke up at night. Nobody was that interested really. Sympathetic, yes, but they all had too much to do to research my problems as well!
I have a lovely District Nurse who comes in to change my dressing and pump and now am waiting for my next surgeon's appointment on 14th May, when I'm dreading the chief consultant telling me that I do have to go through these operations. Still on antibiotics, increased tablets for type 2 Diabetes, 20mg Pred, strong pain killers, etc. etc.
But to everyone - don't do what I did and try to keep on carrying on! My life is now at risk and just because I was in denial about GCA. As I fell and broke my hip I thought, "oh no, this is going to be bad" and sure enough it was. I am 70 - before all this everyone said I looked and acted much younger but now I look horrible with a moon face and buffalo hump, even despite using up mega calories after v. painful operations. Once I was a headmistress, now I cry when I look in the mirror and walk like Quasimodo. Sorry to be so depressing everyone but it has helped to get it out, hope someone reads this.
Love to you all