I originally wrote this in response to a post but I will put it here as a new message in case some of it is helpful to others. Here are my thoughts and experiences so far in the first couple of months of becoming unwell with GCA (and probably PMR).
A little background: I'm just 51, and became unwell suddenly. After some uncertainty about the diagnosis because of my age, severe head pain but initially no temporal artery tenderness and having normal blood tests, I was started on 15 mg pred to see what happened. When the prednisolone was tapered down to zero (as planned by my consultant and agreed to by me to clarify what would happen) I became very unwell with severe head and temporal pain and a return of the previous visual disturbances that I hadn't realised were part of the picture. I had a brief emergency hospital admission and am now working down from 60 mg pred. When well I work full time in a very busy job and in general have a very busy life usually. I've been trying to figure out what to continue with at the moment and how, from small hour by hour issues to the bigger situation once the overall issues become clearer for me with a bit more time.
This is a very frightening situation to be in, particularly at the beginning. I was working full time only a few weeks ago but had to stop as I was too unwell. For me the most frightening time was when I was waiting to be seen by a specialist, had no official diagnosis although I and my GP both had a good idea about what was going on, and I didn’t know how to explain to people what was happening as I had no ‘label’.
I’m full of admiration for people who try to continue working. Regardless of however much we want and try our hardest to carry on, if I could suggest one thing above all else - you can’t continue working safely with early-stage GCA and on high-dose steroids, particularly in a job that involves high levels of responsibility for others. It’s not you - it’s the cognitive and physical effects of the condition and, more significantly, the steroids. One of the effects of the prednisolone is that it changes temporarily the way our thinking is processed and how we retain information ( ie we can’t do it as we normally would). The most important thing is to avoid putting yourself at risk by not being able to do something through no fault of your own. I’m sorry to put it so bluntly but I’m in a position at work regarding responsibility for others and would not be able to forgive myself if I missed something and something went wrong. My employers would expect me to share anything that compromised safety and I need to allow them to help me.
Everyone is different but I’ve found some ways of managing the fear and the uncertainty and how to work with my doctors to understand their thinking. The same things might not apply to you but I’m very happy to share what’s been helping me.
The turning point: this came with the help of people here when they said to me in a previous post about work - I have to accept that I have ‘a serious illness’. It was a shock but a very important message. I’ve never been told I have a serious health condition before, I’ve never been off sick for this long, and I’ve never been at risk of losing my sight before. It was such an important message I copied all their advice into one document and read it over several days whilst I absorbed its implications. Probably also because I can’t retain information at the moment on high-dose pred, but because something like that still feels surreal so it’s taken a while to get the message.
Occupational Health: if you’re working somewhere with access to an Occupational Health service, do use it early on. For me, the support and practical help I’ve received from OH has been invaluable. Their immediate understanding not only of the medical implications but of the work risks and what I needed was extremely helpful. They took on the responsibility for communicating with my manager, and I felt completely believed by them. It’s important to work with the Occ Health system in a job where it is available. It’s hard if you’re not used to being ill and feeling vulnerable but let them take some of the strain. Further down the line you may want their help in thinking about how you do your job to suit you when you’re feeling better but perhaps not entirely well. The earlier they are involved the better.
Telling other people: at the beginning I had no official diagnosis so couldn’t figure out what to tell my friends, particularly as I’d had various other complications that I thought were the main issue. I’d assumed that once I was better from the infections and other problems I’d be back at work as usual. Telling my friends has meant that I’m now feeling much less isolated, people have been lovely and asked to visit, and just getting regular 'hello, how are you?’ messages makes a huge difference. I’m too tired or prednisolone-zonked to see people much at the moment but I’ve got a list of potential visitors all lined up for when I’m feeling up to it, so I’m looking forward to that.
Medical conversations: ironically, it’s been very helpful for me to hear my consultant say he can’t give me an exact schedule at the moment of how things will progress. I guess we all hope for certainty and absolutes but if my consultant can’t predict an exact timeline for when I’ll be able to go back to work, how on earth can anyone else? This turned out to be an important piece of information for my workplace. It indicates that I have something serious and complex but that I’m doing all I can to get better and back to work eventually. It also helped me stop fighting the illness and put myself into ‘patient mode’.
I’ve had times of being very frightened by my symptoms but not knowing what to do. I’ve now asked my doctors for a little checklist of which signs and symptoms I should act upon and how, and which ones they regard as part of the treatment or condition. Doctors are trained to use risk algorithms so they act fast in response to some issues and appear not to be unduly worried by others, but these are sometimes the ones that are worrying us as patients the most. Now I feel much more in control of what to do because I have a checklist, for example, of which visual symptoms to be concerned about and which hospital to go to, and which bruising signs I need to get help for and which I can monitor on my own. I’ve also found that when I asked about that the doctors emphasised - without me asking - that I would be taken seriously at A&E and that it was fine for me to go there if I needed to, which helped too.
Changing schedule: it is impossible for me to try to stick to my pre-illness schedule and routines. One of the most important things I’ve found is to accept that for a while that I am at the whim of the drugs and the symptoms. That has stopped me worrying about not sleeping, having to eat differently and not think straight or be able to walk much. My 24-hour day has taken on a much weirder but more relaxed approach: if I only sleep from 10pm-midnight and then again from 6-7am that’s fine. I can sleep later. It’s not me, it’s the prednisolone. If I can avoid a lot of weight gain by eating several small meals rather than at meal times then that’s what I will try to do.
I’ve been keeping track of what I can do when, and when the prednisolone effects really kick in. That’s been helpful as I’m less likely to be taken unawares - although it keeps changing and suddenly I now can’t do anything after 4pm rather than perking up at around 6pm.
Mood and body changes: these are really hard - but telling myself ‘it’s the prednisolone’ helps me feel less awful when I’m snappy, although I still feel really guilty for the person on the receiving end. I ended up showing my family this article about prednisolone and its effects on mood, and it really helped. They all said they understood and we worked out the best and worst times for me being hyper or irritable and what helps me when I’m feeling like that. I figured out that even just the phone ringing causes me to be flooded with adrenaline for ages and so I’m really snappy when I answer the phone - so people now text me before calling so I’m not on a horrible jittery high every time the phone rings unexpectedly.
The appearance changes are hard. I need to get some new glasses but my face changes shape considerably through the day so I’m trying to figure out the best time to go to the optician so I don’t end up with a Dame Edna Everage look. That said, it’s been good to notice that I don’t always look the same so it must be the prednisolone effects rather than me looking like this forever: I look like a giant red radish when I wake up, a pale gaunt person in the middle of the day, and a greedy hamster by the evening.
Keeping a sense of humour: definitely needed, although not always easy. I’ve had to laugh about the things I’ve been doing: putting a coat hanger in the fridge (it fits very nicely), falling over on to the bed when I try to get dressed, obsessing about broccoli recipes and how many ways to eat potassium-rich foods, forgetting what I ate only five minutes earlier...
This forum: when I’m really worried there’s an answer here. Someone at some time will have experienced what I’m going through. I’ve read a lot of accounts of people’s experiences here and seen that things do get better - but they take a while and the path will have twists and turns. The variety and breadth of what people describe also help me understand that this is not straightforward for the medical specialists either - we present in so many different ways with atypical and overlapping symptoms that it takes the doctors a while to come to a firm conclusion. My symptoms are atypical but I’m fortunate in that my consultant is still treating me with the full recommendations to cover all bases. I’ve also found Kate Gilbert’s book very helpful and dip into it frequently.