Well after some amazing advice on here after being 'diagnosed' with PMR by my GP 2 months ago I tried to get to grips with it all but have had a few hiccups...
Firstly not long after my first post and upping my pred to 20mg due to worsening pain and stiffness I ended upa horrendous cough for a couple of weeks that really knocked me for six. I had another appointment with the GP as about a week after this cough subsided I started experiencing what I was worried was GCA symptoms, headache, jaw claudication and a constant 'heaviness' in the left side of my neck and a numb feeling down the left of my face like I had had an anaesthetic that was wearing off. I called the GP when I lost sight for 10 secs in one eye a couple of times and he upped my dose to 30mg. However, I was getting progressively worsening neck/jaw pain and vision issues so I saw locum GP and he has upped my pred to 60mg and referred me to a rheumatologist. Appointment is not until 24th June. On Friday I had a stupid fall walking the dog and twisted my ankle which hasn't helped...I thought I was going to pass out but luckily made it home (I had literally just left the house and went down a kerb). I have spent the last couple of days recovering although the ankle isn't actually that painful it looks horrendous...
Question is, apart from having a face like a basketball and a beautifully coloured ankle and feeling sorry for myself, what should I go in forearmed with to the GP next week as he wanted to see me if my referral was going to be more than 2 weeks time with a view to reducing my pred down again...? I guess I'm asking what would you say to the GP, my brain is mush at the momeknt what with not sleeping and feeling low assuming due to the steroids, my usual GP didn't see the point in referring me and the one who has is just very confused with everything! It doesn't help that neither GP works more than a couple of days and one is on annual leave...assume this wonderful bruise is due to the Pred??
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Trixiechamp
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Hello, others more learned than me will reply no doubt, but at least you are on a better dose for GCA symptoms, 30mg for eye problems sounds Iike whistling into the wind. The guidelines say you need to be on higher dose for more than two weeks, more like 4, especially if you had eye problems. Not sure what their confusion is, on paper the symptoms sound like GCA.
Your ankle sounds like it was sprained and is a soft tissue injury. The photo looks like it has the classic swelling just below the ankle bone (if that is new!). It is normal to get outrageous bruising that develops over a week and goes through the colours of the rainbow from purples, blues, greens to yellows. Pred does make one bruise more easily which is essentially just bleeding into the tissues. Given it is not that painful I would just watch to make sure it keeps going through the rainbow and doesn't develop more purples or hurts more. For rehab keep it up as much as you can when not walking and when you walk, walk properly don't limp, even if it is much slower. This is to stop getting other tweaks elsewhere in the body and also maintain the proper tone in your foot. Swelling from sprains can hang about for weeks and making sure you keep up the exercises as below is important to prevent the same thing again. Once the pain goes and it becomes out of sight, out of mind, this is the time people forget about it and whoops, It gone again!
Look at this for rehab info. The pic looks vert like yours too.
That's a lovely picture - unfortunately many of us will relate to it all too readily. Arnica cream may help the bruising a little, it was a staple for me, as for the sprain SnazzyD has advised.
With your eye problems, would suggest you need to stay on 60mg for at least a month, and then reduce by 5mg at monthly intervals, provided your symptoms are controlled. Hopefully you should a Rheumy before you have got much lower, but don't let the GP rush you into reducing too quickly - either timeswise or dosage.
If you type in GCA treatment in Google, or suchlike, you should get a link to the British Society of Rheumatology - they have a PDF leaflet. Might be worth taking a copy to your GP!
Actually, just read it and find they recommend reducing quicker than in previous edition - after initial step bt 10mg every 2 weeks. From personal experience would say that's a bit quick, but of course, the rider is - "so long as no symptoms return"
What would I say to the GP? I would be asking why query GCA hasn't been treated as the medical emergency it is classed. Loss of sight can also be a sign of stroke - it is called amaurosis fugax - and you should have been sent to hospital with a note clutched in your sweaty little paw! My optician in Scotland would have done so - so a GP shouldn't think just because they can tell you to take pred they can dispense with it.
It is felt that once fleeting visual symptoms start there is about a week's grace before serious damage is done. At least the locum put you on pred.
That glorious image of damage may be partly due to the pred but can happen with a sprain anyway. Arnica may help it fade a bit faster - always worked for me and a few others on this forum.
To echo what PMRPro said about it being seen as an emergency, my sight hadn't even been lost like yours, just my long sight was failing (plus your other symptoms). From seeing the GP I was in A&E with 60mg of Pred in my tummy within an hour, including driving across town and seeing the doc who picked me out of the check-in queue. If it was me, I'd be writing a little letter to the practice when the dust settles, because in my work surgery that would have been seen as a critical incident. But that's just me and I'm a bit rabid when it comes to improving future customer service!
Trixiechamp, ouch! That ankle looks nasty. Its scarily easy to have these falls especially in the early days following diagnosis and treatment, when the legs seem to have a mind of their own. I had several falls - the knees just wouldn't bend and react to keep me upright so it was never a case of a slight trip and a balancing act to stay upright, it was always a trip followed by finding myself on the ground.....and unable to get up again due to no strength in the muscles! Hot and cold compresses were the order of the day, and I got through a few tubes of arnica.
You need to get that appointment for 24th June brought forward if GCA is suspected, and your symptoms do sound very like GCA affecting the temporal arteries. Download the article on the following link and hand it to your GP - meanwhile if you experience another episode of loss of vision or any other strange eye symptoms, go straight to A&E.
Weave the emergency services into your thinking if your symptoms carry on worsening, it will fast forward you into the hospital system, and your GPs don't sound reassuring although one prescribed the right sort of dose 60 mgs. If you contact the Rheumatology department you may be able to be seen as a priority case. You really can't mess about at your stage.
Good luck! Let us know how you get on. This awfulness will pass.
Thank you, seriously thinking of investing in seeing a specialist in Chertsey who was recommended by one of our fellow members, I believe that because I'm 45 the GP's just aren't taking me seriously because I just don't 'fit' the 'typical' which I know from you all - there isn't one! And I've managed to turn my ankle AGAIN since my last post this morning, just reached for a towel and it gave way, really violently, I almost fainted again, I worry about the stress this is putting my body under and it causing more of a flare, my Dad has bladder cancer surgery next week too so I am going to try very hard to zone out and de stress.....it's feeling all very overwhelming at the moment..
Trixiechamp, you can be assured that Dr Hughes will definitely take you seriously - he treated a patient with suspected PMR even younger than you about a year ago and I know if that patient was to read your post he would say that seeing Dr Hughes was one of the best things he ever did! Certainly, he is the best consultant I have ever come across. Good luck with getting a fast appointment, and lots of good luck wishes for your Dad, too.
Thank you so much, my Dad will be fine I'm sure, this is unfortunately an unexpected relapse that was accidentally found after he was sent for other tests for stomach problems not related, so as it's been caught early he should be fine. Weirdly, he was also diagnosed with a previously undetected serious heart condition the first time he had bladder cancer - he'd been in remission for 7 years before this, I've told him this habit of picking up other conditions has to stop...although at the moment they probably have saved him! X x
Gosh, amazing when such things are found "accidentally" when looking into another condition. And to happen twice....! Your Dad must have someone watching over him.
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Not sure if I have PMR and my preds are not working
GCA temporal arteritis 
All in my mind, apparently!!!
Tingling face with GCA
painful hands, is it carpel tunnel syndrome? 
