Pred MANIA, nobody explains to you the extreme side effects that you can get, I was told that I was just hypersensitive to Pred. I've been 'hypersensitive' to every movement on the different amounts that I have taken, starting at 50 mg (PMR/GCA) diagnosed after biopsy in August this year, now at 30 mg and fairly settled at moment after a couple of weeks settling, although do get exhausted thighs on any uphill challenge! The one thing that I am quite nervous about is driving, normally a very confident driver, but since this has happened, I can drive to a destination, say 45 mins away. To return a little later, and say 10 mins into journey I seem to be losing concentration, so open windows etc. Yesterday I actually felt that I might have to stop again which would extend the time before reaching home.
The problem is, I live in fairly rural area, 45 mins drive to hospital, very restricted public transport (would take 1.5 hrs to get there, return restricted if running).
Question, does anyone else have this happen to them? Is it a common problem? If it is going to be commonplace, I will have to make alternative arrangements!
Written by
lillegirl
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I did find that I lost confidence about doing a lot of things on my own , some of them associated with driving, but not like that.
Thirty mg is still a pretty big dose really - do you think it might be simply that you are getting overtired. After all, by the time you've driven to the hospital and concentrated hard all the way, then faffed about IN the hospital (or whatever you are doing) you are likely to be getting tired by then which would account for the feeling. There is no option for lying down for a rest first - since I bet a nap would eliminate the problem. You are still ill, you are only 2 months into GCA and the fatigue bit will still be very active. It is very difficult to do a lot without feeling you are hitting a brick wall of fatigue and you sit there wondering how you do the next bit of whatever you are doing. I "only" have PMR and it happened to me for a few years on and off. The trouble is - you have no idea when it is going to hit.
Do you have a friend who would willingly take you for a "day out"? If you aren't driving yourself you might feel up to a light lunch or afternoon tea to make it more enjoyable. Given your very poor public transport links - and you'd get even more tired doing it I would imagine - have you thought about discussing this with your GP and asking for a patient transport request? It's effectively a door to door mini-bus which picks up several patients and takes them to the clinic. It can mean a longish trip because it doesn't fit your pick-up to the hospital appointment except to get you there during the appropriate time slot (the clinic's, not your personal appointment time) but the clinic knows you are with patient transport and when you arrive you are fitted in so you are free for PTS to take you home again within their working day.
It was something that REALLY got us - my husband who worked there and me - annoyed was when they built the new PFI hospital in Durham. Fewer beds because everyone was going to be going home sooner for their post-op care (and we all know where that has got them) and less parking because everyone was to be encouraged to use public transport. Even if you lived in the town it sometimes took 2 buses - if you lived in the Dales you could spent all blooming day getting there and back. Just what you want to do if you are ill enough to need to go there! There wasn't enough room for staff parking either - and there were no buses to get you to work for 6.30am or home at nearly midnight!
Must admit I didn't drive at all for about five months after GCA diagnosed, but that was because of loss of right eye, and the lack of confdence that left me with. However, I was still on about 25 - 30mg at the time I did restart driving, but most of the initial side effects and coming to terms with GCA had gone by then. I don't think people always realise how difficult it can be coming to terms with a long term illness emotionally, and how it can affect you.
Even now, although I like driving, if I'm going on a longish or unfamilar journey I do try and rest the day before, and get my head in the right place.
I must admit a few weeks ago, after suffering with a consistant, annoying cough, which kept me awake at nights, I was driving one day, when I thought "you're not concentrating properly" and gave myself a good telling off! So sometimes, it's just a general feeling of not totally being in control, so best to avoid driving, if possible those days. Not always easy, I know, my public transport is practically non existant, and I have OA in knee & dodgy back so walking is limited - so the car it is!
I gave up driving long distances at more or less the time when I got PMR. The strain on my shoulders was too great and I was getting too tired to be safe. I haven't done any long distance driving in the past four years. I 'let the train take the strain'! I haven't even tried to drive for more than local trips.
Just coming out other end of GCA ,driving can still be a problem only like to go short trips alone . My sister lives 35miles away used to drive there and back every month use train now . I think we get knocked back so much by these conditions we are used to being in charge
Been diagnosed with GCA a month and taking at the moment 50mgs of preds. Can't drive, too shaky, can hardly walk never mind drive. Just starting to lower the dose was on 60 until now. Feel I will be back driving as I lose the side effects of the drugs. Still get so exhausted, and of course little sleep which doesn't help.
I think I know what you mean. I "worry" about driving. Because of brain for, baance problems etc. I tend to drive if I have someone with me, or, if someone is contactable that couple come and pick me up if I totally lose it. I've not had any problems whilst I make sure before I drive that there is someone available if needed.
I am not boasting here, I've been accused of saying this sort of thing to make others feel inadequate. Far from it, but if it is any consolation to anyone - this summer, shortly after getting back from our trip to China, OH decided if we were coming to the UK this summer it had to be NOW and booked a ferry for Friday evening.
So on the Wednesday we set off for a day in Innsbruck for him to work and then drove an hour to a hotel in the back of beyond for the night before setting off for 2 days heading for an overnight crossing from Hook of Holland, one night on the way in southwest Germany. We then went from Harwich to Whitby, to Shotley Bridge, to Edinburgh, Preston, Charmouth, Bishop's Waltham and overnight from Portsmouth to Le Havre and a 2 day drive back home.
I drove it all (I drive the car, he drives the camper van) except 80 miles between France and Stuttgart to the hotel - I'd really had enough for the day and it was booked! We never stayed anywhere more than 3 nights. I was fine, I actually enjoyed it all and wasn't tired.
You WILL get back to normality - it might not be next week but it will come!
We'd have used the camper but it isn't very practical at most of the people we visit - nowhere to park close-by and miles to a campsite in most cases. Even in Whitby it means a very long walk! The older ones are posh enough to have a guest room - the daughters are both as resourceful as we used to be and we bring our own bedding. We used to have a towed caravan but towing anything restricts you to a maximum of 60mph - with the car (or campervan) on its own it's 80mph in much of Germany and France. When you drive 2,700 miles it's quite good to be able to go fast when the opportunity is there!
Not at all! I would like to use the camper to come to the UK - I detest packing cases! We did do it once but borrowed one daughter's car to visit the other for convenience as the nearest campsite is about 10 miles away - would have taken about an hour and a half with the bus! But it all works very well with the car and we are more independent of other people too.
lillegirl, you are certainly not alone in losing your concentration and hence your confidence with driving. In fact, I lost my concentration for anything and everything for some time. It took me a year to get a diagnosis, several months of which were spent in bed, so I didn't drive for about 18 months. I slowly got back into small very local journeys but will never forget how nervous I felt the first time I decided to drive the 45 minutes or so to see my son through the very built-up and busy town of Kingston-upon-Thames. Having done the journey for years without a second thought, it was quite a shock to feel so lacking in confidence and out-of-practice.
You are still on what is considered a high dose of steroids which can affect the concentration of some people more than others and whilst you feel like this you would be wise to try and find ways around not driving until you feel a little more in control, and things will improve, I promise.
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