Advice please

[Janann25]

I have been struggling to deal with my PMR and GCA - I never seem to see the same doctor twice at my local surgery and they have all been keen to pass my problems to a rheumatologist. So, in August this year I got a referral but she is very keen to "get me off these dangerous drugs" as quickly as possible, even though I'm till having GCA symptoms. So, I was hoping that someone here could recommend another rheumatologist who could possibly help me. I live in North Wiltshire and realise I will have to travel to see him or her but I'm more than prepared to do that.

Thank you.

[markbenjamin57]

Greetings Janann25

Sorry to hear that you're having problems.

I'm sure the Aunties will be along soon with their expert opinions, but it does seem strange for a Rheumy (especially) to be pushing you to reduce the allegedly 'dangerous' steroids if you are indeed suffering with GCA symptoms - which can be much MORE dangerous if not managed speedily and expertly. Mmmm...

If it helps, my local Rheumy in North Somerset is Dr Samy Zakout (he is young-ish, originally from Palestine, not that that matters!). I have seen him a couple of times at Weston super Mare General Hospital - he's always very thorough, thoughtful and seems to know his stuff. I believe he is a specialist in PMR and GCA. Some Rheumys aren't, and that's sometimes part of the problem..

Hope this helps, and good luck in sorting things out satisfactorily. Anxieties and uncertainty about these things doesn't help one bit.. as many of Us Lot here well know!

Best wishes and keep us posted...

'Uncle' MB

[PMRpro Ambassador in reply to markbenjamin57]

He trained with Prof Kirwan - he should know his stuff.

[markbenjamin57 in reply to PMRpro]

Ah yes PMRpro, I remember now

[Janann25 in reply to markbenjamin57]

Thank you so much for the information - and yes, it was one of the "Aunties" who suggested I posted this, asking for help from all "You Lot"!! How did you come to see him originally? Were you automatically referred to him or did you approach him individually - and if so, how did you contact him? Many thanks again.

[markbenjamin57 in reply to Janann25]

No worry, glad to help

I was referred to a different Rheumy by my GP but somehow ended up seeing Dr Samy Zakout on the actual day (after a 12 week NHS wait though..). Of course, I was new to all this at the time, having just been informally diagnosed with a mysterious thing called PMR by my GP, so Samy could have been the bloke from the pub for all I knew!

I'm not sure about the process for contacting him direct for a consultation, or whether you need to go via your GP? I suppose you could always have a go at contacting Dr Zakout via his secretary at the Rheumatology Dept at WSM NHS Trust (01934 881035). Nothing lost in trying - but I expect PMR and others will know more about this

[PMRpro Ambassador in reply to markbenjamin57]

Not me - don't live in England remember!

He doesn't do private work as far as I can see - but contacting his secretary should elicit info as to how to go about seeing him.

[markbenjamin57 in reply to PMRpro]

But you know EVERYTHING PMRpro

[Janann25 in reply to markbenjamin57]

Thanks, I'll try contacting her for any info on Monday.

[PMRpro Ambassador in reply to markbenjamin57]

Nah - never claimed that...

[Janann25 in reply to markbenjamin57]

Just seen PMRpro's response about trying to get info from his secretary so that's what I'll do .

[markbenjamin57 in reply to Janann25]

Good luck, let us know how you get on

[Polywotsit PMRGCAuk team member]

Hi Janann25,

I realise there is a body of opinion on this forum that says that you should 'listen to your body' etc and follow 'dead slow reduction'. All of this is valid up to a point. But it is worrying the hell out of me. I note that you were first diagnosed back last spring and had your dose upped to 40mg because of 'possible GCA' in August, and I surmise that you are currently somewhere around 30mg. That means that you have been on high doses for something more than 3 months. Did you have a biopsy? Ultrasound? Who diagnosed your possible GCA? I can completely understand a rheumatologist throwing a fit about this. The principle of reducing 10% at a time refers to the period during the course of the illness when you are getting down from about 12mg on a slow taper. It doesn't apply to the early stages of treatment where the initial high steroid dose will have kicked the giant cells into touch and restored blood circulation in your body and mopped up a lot of the inflammation. If your GCA-like symptoms have not resolved yet then you must get a firmer diagnosis. The rheumatologist can't do that without getting your levels of steroids down. Have some faith in the rheumatologist's knowledge and wisdom. It may be that you would benefit from a course of methotrexate to 'spare' the steroids. Your body has fallen in love with prednisolone - it's not addictive but it does generate a kind of physical dependency. If you listen to your body you will just take more and more of the stuff.

best wishes

Kate

[Janann25 in reply to Polywotsit]

Hi again Kate

I'm so sorry to have to contact you but I've just been thinking about your comments and notice that you say it is important that I get a "firmer diagnosis" but I don't know how to do that. I understand from what Ive read here that a positive biopsy is the only way of knowing for sure that GCA is present but I'm wondering now if there's another way of knowing this. I'd really appreciate your comments.

Many thanks

Jan

[Janann25]

Thank you so much for your comments. And no, I've not had a definite diagnosis of GCA. I had a diagnosis of PMR in May of this year, when my CRP levels were 128. By the time I saw the rheumatologist in July, they were still at 28, which she said was not what she expected after 2 months at 15mg. At that time, I was experiencing both severe dizziness and headaches, which were followed by double vision. The double vision was corrected by my own optician, by the use of prisms in my lenses, but the rheumatologist thought it prudent to increase my dose to 40mg for "possible GCA". I had an MRA scan which was clear, then had a scan the same day as attending for a biopsy. However, when the doctor who was due to complete the biopsy looked at my notes, he said he couldn't quite see why I'd been referred to him because I'd been on Pred too long to give a definite diagnosis so it wasn't done. I haven't seen the rheumatologist since August and I'm not due to see her again until 8 February- she hasn't got any more appointments before then. So, I've been tapering VERY slowly and am currently on 30mg with instructions to reduce to 25mg. It's so hard to know what to do for the best - I just hope I can contact one of her support nurses on Monday to ask for advice.