Can You Recommend a Consultant?

[Ronnie101]

After 2+ years of GCA I'm still yo - yoing my pred dose trying to control symptoms (temple and jaw pain, eye pain and disturbances). Apart from one flare last year, my esr and crp levels are always normal, and whenever I see my rheumatologist he just seems to dismiss my symptoms and reduces my pred dose.

At my last meeting with him he was visibly annoyed with me for increasing my pred dose without referring to him (I was out of the country at the time), despite me experiencing quite severe eye problems.

The fact is that I just I can't get hold of him, or indeed anyone, in the case of a spike in symptoms to get advice. His secretary won't return my calls - she has a standard answerphone message which refers callers to a "rheumatology helpline" which is only open for 2 hours on 2 mornings per week. I've phoned this on several occasions, and left messages. A nurse did phone me back, and when I explained I wanted urgent advice given my symptoms, she said she couldn't give advice and would try and get hold of my consultant. 2 days later she phoned me back, telling me to increase my pred dose, which seemed to help.

I went to A&E last month after phoning 111 and speaking to a doctor. At A&E they increased my pred dose (to 30 mg) after taking bloods (which again were normal).

I'm not sure what to do next - I am still experiencing the same symptoms which come and go on a daily basis. I'm really reluctant to increase my dose any further because I'm having treatment for pred side effects (acute angle glaucoma and cataracts). I have an appointment with my GP but not for another 2 weeks (she's booking 1 month ahead at the moment), but I would like to discuss being referred to another consultant if possible.

Can anyone recommend another consultant within driving distance of Milton Keynes?

Apologies for the long post and thanks in advance.

[SheffieldJane]

In my opinion your treatment is unacceptable and I would be reacting much as you are, increasing my dose and seeking a new rheumatologist, possibly GP too.This ineptitude on the part of the medics that surround you could cost you your sight. You should be being treated with the same urgency as someone in danger of having a stroke.

I hope someone comes forward with a Rheumatologist recommendation. I have Dr Mackie based at Leeds ( Chapel Alerton Hospital ) I travel to appointments from Sheffield ( over an hour) but she has a special interest in PMR and GCA and is conducting a study into fatigue and asteroid side effects. I feel that I am in very good hands. You need to be too!!!

I hope your situation improves drastically! Keep fighting, you must!

Keep us posted - this is not right. Bless you.

[SheffieldJane in reply to SheffieldJane]

I meant STEROID side effects obviously. Thanks auto correct!

[Ronnie101 in reply to SheffieldJane]

Thank you Jane, it's so helpful to know I'm not being unreasonable. Also you cheered me up to think that this condition could have an out of this world dimension!

[PMRpro Ambassador in reply to SheffieldJane]

I preferred the asteroid...

[LizzieGuinn in reply to SheffieldJane]

But asteroid side effects sound much more twinkly - I think I shall adopt that description to keep me cheerful! 😉

[PMRpro Ambassador]

Chertsey - Dr Rod Hughes. He also does private if you could afford a single visit and then he'd probably put you on his NHS list. Ashford and St Peters Hospital - just google his name to get his website. There are several people on the forum who go to him.

[Ronnie101]

Thanks for the responses. Does anyone know of a suitable consultant in the Birmingham area?

[Retailmonkey in reply to Ronnie101]

Not in Birmingham but I have found the team at the Nuffield Orthopedic in Oxford very good and not far from MK

[Carrollee in reply to Retailmonkey]

Hi Retailmonkey.

Am interested in your response as I attend the Nuffield orthopaedic in Oxford. Who do you see?. My apptments get cancelled so big gaps between advice and blood tests (a year without tests this time). Am also being pushed to take methotrexate although I don't want to. The first reduction regime I was given at Oxford was 14 months from start to finish. Too fast for me and had return of symptoms and awful withdrawal symptoms. I have pmr and GCA and now on 9mg after 2yrs, highest dose 60mg. Hope your doing ok Cc

[Retailmonkey in reply to Carrollee]

I see both Prof Luqumani and Dr O'Neil as well as having regular ultrasound scans (I was a volunteer patient for one of their international courses and diagnosed 7 times in an afternoon!!). I have my next appointment in a weeks time and my problem has more being about me moving appointments due to working abroad rather than then cancelling. I am one of the very lucky ones so far (though I am not complacent) who is now on 6 mg (2nd week) from a 40 mg start in August 2016. I do have a constant low level headache (but then, despite age, I push myself quite hard) and recently have had a recurring sore throat which my pharmacist puts down to Methotraxate rather than bugs picked up on flights (though I do quite like the gravelly voice!). I think I am just at the tricky point if everything I read on here is followed. My next few visits with them could be interesting as I think I might well want to look at some of my drugs and move forward more slowly to not disturb the path so far. Not all is brilliant as I tap this out on my phone at 2:30 am!

[Jackoh in reply to Ronnie101]

I wonder if anyone on here has had experience of Dr Carruthers at City hospital/Sandwell hospital in the West Midlands? I don't go to him but was impressed with him at the Birmingham Roadshow.

[Rugger]

Just to let you know that I've been on Sarah Mackie's waiting list for 3 months with no sign of an appointment yet, so no good if you need urgent advice. She's got such a good reputation and that's why we're all waiting to see her! She sees patients in Otley, West Yorkshire.