I am under investigation for GCA and have been taking pred for about 6 weeks. The Rheumatologist titration down as scan was clear and bloods all ok. At 10mg headaches returned with such intensity been signed off work until this Friday. Symptoms are much worse than initially, having to rest more, trouble keeping eyes open and 24/7 headaches. Been put up to 30mg in last 4 days and seeing consultant today for scan. I work 34 hours a week for the NHS and as community have to drive many miles.
is it reasonable to ask for extra time off? Does anyone else on here work full time and how have they managed it? I’m 64 and have 18 months before I can retire.
thanks for any advice.
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lovelillies
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I took myself off the road at these doses as I felt that I was too foggy and lacked concentration and judgment to be safe to others. I also didn’t work for the same reason. Even if you don’t have a diagnosis, Pred at this level is not like taking a Paracetamol! Whatever it is causing your symptoms it is affecting you too at a level that suggests you should be signed off further.
What was the scan you had? Is the recently increased dose making things better at all? Not everyone has abnormal inflammatory markers in their blood. I was diagnosed purely on the basis of response to 60mg Pred which helped within hours. My bloods were normal and my biopsy was normal (has a moderate false negative rate) and my PET scan was done too long after Pred to be meaningful.
Thank you for your reply. It was an ultrasound type scan of each side of head and under arms. Also been to eye hospital twice. Assuming he is going to repeat same scan this afternoon. He wanted the quick reduction from 40 to zero in 15 days to see if the next scan showed any inflammation. Didn’t make it to less than 10 and that was only for 2 days. Symptoms are definitely much worse than before taking pred. It’s very scary as I haven’t had to take any meds except anti depressants on and off over the years.
If GCA it is serious -and needs managing with correct dose,
I was about your age when I was diagnosed -and on 80mg (long story) but stopped driving for a few months - although more due to sight loss rather than effects of Pred.
The longer you are on Pred the more investigations can be affected. Also, GCA may affect other, deeper head arteries as well as bigger ones lower down and not necessarily the eye ones either. The ultrasound scan can only see the ones nearer the surface and it does depend how well the Pred did for you before it was carried out.
If it is GCA it is serious and should be treated as an emergency because of the risk to sight. Longer term there is a risk of stroke and aneurysms if it isn’t treated. My experience was not the same as yours and might be worth noting it can be dealt with differently. I called 111 on a Sunday and they booked me into an out of hours GP who took 10 minutes to decide to send me to A&E and they called ahead. I was picked out of the queue and within half an hour I had had bloods done and was given 60mg Pred for a week before 40mg for 6 weeks. Because I felt so much better GCA-wise, they kept me on it and didn’t mess about with reducing the dose to make me worse again. By the time I saw the ophthalmologist later in the day, my eyes had recovered after starting to shut down in A&E. A CT the same day to rule out other things was done too. I saw a rheumatologist early next day after being sent home. As I said, my PET scan 3 weeks later was useless and bloods were normal throughout. Temporal artery ultrasound was not available as a procedure at the time as it takes special training.
After that my aftercare went downhill but by then I was well able to help myself and had a decent GP.
Are there any “early retirement on health grounds” schemes open to you? Working with GCA will be impossible in my view. It would be good to transition from long term sick leave to retirement on health grounds. In the Civil Service this was the most financially advantageous way to retire. Ensure that you are being advised correctly. You ought not risk reducing the steroid anti-inflammatory properties whilst being investigated for GCA, that is risky. The blood tests are not always reliable, you need to be protected. My GCA was quickly diagnosed by ultrasound scan.
I was diagnosed purely on response to Pred, inflammation markers normal, no scans done. That was 4 years ago. I continued working for the first 2.5 years. It was EXTREMELY difficult - i was not the person they hired. I missed targets and deadlines, took time off on bad days. And was made redundant about 16 months ago.
No doc gave me any advice on taking time off work. I wish they had - because I really struggled and ultimately was beating myself up + (I feel) lost the respect of my colleagues. And after a couple of under par performance reviews, of course I was on track for redundancy.
If i could turn the clock back and give advice to myself: If you are not well, don't push it and make it worse. Listen to your body. Career-wise, don't hang on if you know you're not able to meet targets. The performance review scores you get when you're not well will lead to other consequences as well as lower your average, mess up referrals when you apply for your next job... Take the sick leave. Companies have insurance to cover that cost.
Under the circumstances - I'd say you should be signed off sick. If it is GCA it is a serious systemic illness but the medication is a serious drug too with lots of effects that make a responsible job and driving difficult to negotiate safely in every sense of the word.
The NHS doesn't usually rush to care for its own - so take matters in your own hands until they sort things out. Go off sick until you are fit to drive around and look after patients who probably aren't as sick as you!!!
Don't forget that the reason why you have been paying NI contributions is to cover your sick pay if needed. Don't feel guilty if you need to take time off.
Sadly, many of us here have had to leave work because of PMR or GCA. I was 63. It's a horrible wrench, but at least pensionable age is within sight, and you don't have to worry about how it will look on your CV!
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