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