It is now twelve months since a chance watching of a Doc Martin repeat on the television where he diagnosed his aunt as having GCA lead me to investigating GCA on the internet and realising that the symptoms my doctor and I had been investigating and trying to explain for 8 months were in fact symptoms of PMR/GCA. A call the next day about what I was thinking lead her to say “I think you have an idea what the problem is” to which I said “I think it is GCA especially because of the swollen arteries in my forehead”. She agreed and within an hour I was having a blood test. Being Friday, it was Monday before the results came in and, although the markers were not that high they were high enough for the doctor to ring the rheumatology department at the local hospital to get me an appointment. It was another two weeks before that appointment happened but I was on 40 mg of prednisolone from that first Monday and with immediate miraculous reaction – aches and pains gone almost overnight and energy levels back to those of my fifties (I am now in my seventies).
My first appointment with the rheumatologist was interesting as she was much more interested in my symptoms history and drug reaction than my blood test as she felt the former were much better indicators of my condition than the blood markers. The Oxford Nuffield is one of the more advanced users of ultrasound and a lengthy series of scans showed up inflammation in both temples (significantly more in the right than the left) and under both arms (again more the right than the left). So, it was in to a longer-term regime – the addition of methotrexate, aspirin, and all the bone strengthening additives. It also came with a corticosteroid reduction programme in line with that recommended by the British Rheumatology Association (which is a much faster reduction programme than many consultants and virtually all the knowledgeable people on this site would suggest). I stuck to it pretty much though I still work (part time) and over the past year that has meant commuting to Moscow on a two-monthly basis for a couple of weeks at a time. I’ve never implemented a reduction shortly before or during a trip knowing my stress levels would be up and so by April of this year I had reduced to 8mg of Prednisolone and seemed to be progressing quite well. Regular scans had shown the inflammation halos shrinking and by April they were only just apparent. At that point, my consultant wanted me to go into overdrive on the reductions and increased my Methotrexate 25mg per week and wanted me to reduce the prednisolone by 1 mg every three weeks.
Fortunately, or unfortunately an inflammation of my sciatic nerve and the consequent issues with the leg it served caused me not to implement the reduction but to stay at my 8 mg for some extra weeks but by the 8th July I was down to 5mg (though not reducing every 3 weeks) and along came my next trip to Moscow. A couple of days before I went my right temple started to become a little tender and the scalp on the right side of my head, sensitive. Having had this sort of thing happen many times over the year I ignored it and got on m=with my trip. By the Tuesday it was beginning to trouble me and I emailed the rheumatologist for advice and on Wednesday increased the prednisolone to 10mg. Then on Thursday morning something strange happened. Eating breakfast felt like I had just had a tooth filled and the anaesthetic hadn’t worn off. When I went into the office and a meeting several people asked if my eye was alright. The mouth sensation worsened during the day but I thought nothing of it as there was a lot to be done before with only one more day out there. When I woke the next morning, the truth dawned and I realised the whole of the right side of my face was paralysed, my right temple arteries swollen and my scalp on that side quite sore.
No chance of going to the office. Managed to get on a BA flight 2 hours earlier and headed off to the airport to check with the medical centre there that I was alright to fly. They wanted me to go to hospital in Moscow but I wanted to get back and persuaded them to let me fly if I stayed under observation I the medical centre until my flight. That I did, flew in to Heathrow and managed to drive to the JR hospital in Oxford with some difficulty due to the state of my eye- They immediately checked for it being part of a stroke and having determined it wasn’t I went through the lengthy process of triage and assessment. To spare you all the details of real professional treatment let down by poor processes and staffing, it turned out I have Bell’s Palsy – a paralysis of the facial nerve caused by an inflammation which can happen when it goes through the mastoid bone in the ear. As I understand it is another autoimmune related problem of unknown cause but again one which goes away (can take up to nine months) and treated with a shock 10-day course of prednisolone (starting at 60mg for 5 days and tapering to zero after another five). It affects mainly people 20-50, both sexes equally though a lot of pregnant women are prone to it. (wouldn’t mind being back in the age group but without the pregnancy). The main problems are you cannot shut your eye, cannot blink and drinking is a rather messy process.
As I have been throughout the PMRGCA experience I remain totally positive – I am going to manage this just like I do the rest, accept that this one should have a shorter period before remission (but that it isn’t going to be cured) and I will take all the action I can to get my face moving again (having to tape my eye shut to sleep is my biggest single issue). So far, the signs are encouraging and, although changes are marginal, I can see movement coming back
I’ve searched the literature and the web to see if I can find any link between GCA and Ball’s palsy because I find it too much of a coincidence that what I believe was a flare and the onset of the palsy should happen at the same time fortuitously. I’m going for a scan and consultation tomorrow and will be asking the professionals views. Do any of our expers know of any link – I would welcome your views.
This may not fall into the same league as some of the surrounding problems to PMRGCA that members of the forum must live with but this one certainly frightened me not helped by being in Moscow. Maybe it is a sign that Oxford needs to line up more with Bristol and the slow camp. Maybe it is a sign that I need to slow down a bit more. Or maybe it is just that things even themselves out over your lifetime and the rest of it was too healthy
Greetings to all members of the forum – whilst you are not aware of it, your presence has had a real positive influence on the last twelve months for me
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Retailmonkey
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So sorry to hear about your Bell's Palsy - sure it must have been very frightening for you on top of GCA/PMR.
Can't say I've ever seen or heard about it being connected to either, but as you know, we never say never, there's always new info emerging about auto-immune illnesses/connections etc.
On a brighter note both my husband and my sister contacted BP, and both recovered fully. Hubby was in his 40s and a serving member of HM Forces at the time and it seemed to occur, if memory serves me correct, after he'd been outside working in very cold and windy conditions.
My sister's, who was older than that when hers "appeared", was also attributed to her being in a cold and draughty workplace.
As I say both fully recovered, but it did take some time. Good luck.
Very encouraging to hear about the experience of both you husband ans sister and very encouraged by their outcome. Not knowing anyone who had been through this it is always great (as with everything in the forum) to hear from peoples experience to put your mind at rest
Interesting about the common circumstance of the cold. In my case Moscow was warm (though hardly sunny - in the 60 or so days I have spent there I con only remember 3 or 4 when the sun shone though the people I work with tell me that isn't usual)
I'm really quite surprised how much improvement there has been already round my eye particularly since the A&E doctor told me I had a full blown paralysis and couldn't expect to see much improvement for a couple of weeks. Still cannot sit opposite anyone whilst drinking my coffee!!
Bells Palsy is caused by damage to a particular nerve - so I suppose it is possible that a vasculitis COULD be the cause of the damage in the same way as GCA damages the optic nerve by interrupting the blood supply. A differential diagnosis also seems to be a form of vasculitis, Wegeners vasculitis.
Nothing I have read has come up with any agreed cause. There are suggestions that it is viral and hence five days of an antiviral drug (studies using antiviral treatment on its own or even in conjunction with prednisolone have not been shown to be any more effective than prednisolone on its own). One mention that does interest me follows on from something you posted some time ago pointing out that the shingles vaccination had produced a couple of side effects of PMRGCA which could be directly traced to the vaccine trials. Shingles is one of the things I have seen mentioned in relation to Bell's. Having had a shingles vaccination some 8 months before my PMRGCA was confirmed it is something I have always wondered about. Perhaps I should submit a MHRA Yellow card reporting scheme to see if there is any link in my case.
I'll let you know how my theories go down with my rheumatologist!!!
I said I would report back after my visit to my rheumatologist yesterday. It was slight chaos at the hospital as the whole Oxford University Hospitals Trust computer system collapsed whilst I was there for an hour. You can imagine how many problems that it created for them and the delays for the patients. I have to say they handled it very well and kept people well informed about the situation. Professionally we are very lucky with our health service. If they could fill the vacancies, sort out the systems and fund it properly (which we would have to pay for) then it would even more be number one in the world.
My rheumatologist saw absolutely no link between my GCA and Bell's palsy except that they are both idiopathic (a word I hadn't come across before but which apparently means "arises spontaneously with an unknown cause). Obviously Bells is more specific and the direct cause is the inflammation of the facial nerve normally as it passes through the inner ear but what causes that is still unknown. He was quite interested that I had had a couple of insect bites on my chin a couple of days before the paralysis appeared and that there might have been some adverse reaction to them that affected the inner ear area. He said I just had to put it down to being unexplained and move on as we would never know. Like a lot of these less common issues (PMRGCA included) it is probably going to be some time before there is sufficient funding available to carry out the research which will resolve the source. I did raise the shingles issue which interestingly he felt that the link between vaccination and PMRGCA side effects had been discounted as the results of the original testing had not been repeatable and so were now considered to be just a random occurrence.
From my point of view I seem to be recovering from the palsy at a far quicker rate than anybody had indicated that I would. After just two weeks I can now raise my eyebrow (though not blink or close it properly) and I can drink properly from a cup again much to my relief (or is the relief in being able to drink from a wine glass?)
We did agree that I had had a GCA flare and that was almost certainly down to the speed of the prednisolone reduction that he had pushed me to. We have now agreed a schedule which is going to bring me back from the 60mg for the Bells to a level of 10mg for the PMRGCA which is fairly steady and we then look to coming down from the 10mg over the next twelve months rather than the six he had been pushing me to do. Will be interesting to compare the dead slow method with the history of the last six months
Sorry that no amazing new insights came out of my consultation though it was good to have a more rounded discussion with him (enabled by the fact he didn't need the computer system to talk to me whilst he did for the queue outside)
Nice to see you back here Retailmonkey - although less-so about your trials and tribulations!
I can relate to your account of being 'a foreigner in trouble' in a strange country (especially in Eastern Europe). Been there and got the T-shirt too - I could share a few hair-raising (but occasionally hilarious and heart-warming) stories about my experiences of working and travelling in Ukraine a few years ago if you've got a few hours spare?!
The main thing is that you seem to have some reliable diagnosis at last, fingers crossed for a good recovery.
Best wishes and keep us posted. The Aunties here, especially, need a bit of excitement to keep them on their toes
I think a few hours talking about the delights of working overseas would be a great experience! My career was totally UK based until 25 years ago when my main role was a Managing Director of the Brentford Nylons retail chain (somebody had to do it!) but also as marketing director of it's parent company (Lonrho Textiles) which made me responsible for exports and my introduction to business travelling, first in Europe and later the rest of the world when I took on running the UK's 5th oldest company (Early's of Witney founded in 1669 and run by the same family for over 300 year!). Since passing pensionable age and working for myself in 2008 I have only had one project in the UK (a couple of months with Tesco's F&F clothing division) and so spent my time roaming Europe both western and Eastern.
It is not the glamorous life people might think from the outside but it does have a lot of fun and a lot of satisfaction for all the hard work and hopefully I have got a few more years of being able to keep up with all the young people you get in retail merchandise planning and buying these days (it is some time since I started working with people young enough to be my children. Now quite a few of them are young enough to be my grandchildren!!! - at least they call me Uncle Keith rather than Grandad.
As always your contributions to the forum are a great source of pleasure so long may they continue even after all your symptoms have disappeared. As for the Aunties I fell foul of one of them (she knows which one) in my first ever comment in the forum when I refereed to temporal veins instead of arteries invoking the comment that the clue was in the word "arteritis", I don't think they need much to keep them on their toes and I hope they realise how much we all appreciate them
Hi Retailmonkey. I think you may have hit the nail on the head quote............'Maybe it is a sign I need to slow down a bit!' Certainly remarkable that even with PMR/ GCA you seemed to be carrying on as per normal in your job which,from your post, suggests it is somewhat high performing and something you quite enjoy. I'm guessing the clue might be in your username?
However, whatever the circumstances no job is worth sacrificing your health for. Listen to your body, however difficult and alien that may be for you.
Yes my username is the clue - the monkey coming from my 8 year old daughter describing me as an ape on skis (I have extremely bowed legs) many years ago and my profession being in retail. In fact my first retail experience was my mothers sweet shop back in the 1950's as a nine year old which is where my passion for Quality Street chocolate developed (pinching them from the tin when the shop was shut. It is a bit different these days as a consultant in merchandise planning processes which has led to me working round Europe for the last nine years. I really love what I do (sadly something that has rubbed off on to my daughter who despite having a first class law degree is currently in a senior role in the John Lewis Partnership which she blames on me for dragging her round shops through all her formative years)
I take your point about slowing down and might well have done so if /i could find things that would give me the same pleasure that I get out of the work that I do particularly when I see the young people that I work with develop and grow. When I get back to a hotel in the evening with the weariness that we all suffer from thinking about what we have achieved that day eases the feeling.
As for listening to my body I have another unfortunate problem and that is that I spent ten years playing international sport at just below international level. That embedded the attitude that you pushed your body as far as it would go and then just a little bit further if you were really going to achieve something but also that you needed periods of reast to catch up with what you were doing. Perhaps I need to extend those rest periods rather than give up on the work
It is refreshing that your passion for your work is still as strong as ever. That came across loud and clear.
I was fortunate in that too, before retiring two years ago from a Headship. However, ever driven, I only retired for six months and now have a different job, part time, in charge of my own diary and workload, still at management and leadership level in education but different field so now have the best of both worlds. Am really lucky.
When I think back to when I decided to retire I am though now wondering if this coincided with the very beginnings of PMR symptomd and that I just didn't know it then. I guess I never will.
Your sporting background explains a lot and your conditioning of your body to push even further worries me a bit. On top of PMR Bells Palsy? Think you are right in your summation - keep doing the job but lengthen the rest periods! Be kind to that body before it kicks off big time.
PS great that your daughter is equally as passionate about her chosen career path. Take care.
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Headache after coming off prednisolone 
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