Research project in Glasgow - Knee OA.

Hi All. As an NRAS Scottish Ambassador I attended four excellent presentations held in the Scottish Parliament last Wednesday evening - organised by Arthritis Care. I've been asked to pass on this information about Professor Martijn Steultjens’ current research studies on Osteoarthritis and Pain. If you are over 40 and have knee OA and are interested in taking part in this research then you can contact Stephanie at; [e-mail].

[allanah]

Sorry I'm far too young!!!

Glad you enjoyed the presentations what were they on?

[Hidden in reply to allanah]

"Remission Impossible" A Mountain to Climb" (but here's hoping ..!) by Dr Duncan Porter (he was rather fab!) - the Scottish Public Health Network (Scot PHN report on RA services 2012) by Dr Martin Perry (co-author) and the Dutch chap whose poster I've put up. My rheumy chaired it and the head of Arthritis Care Scotland and the CEO of AC both spoke too. It was really interesting although some of it whizzed past my silly old brain I admit! X

[allanah in reply to Hidden]

Sounds great and loving the titles

Xx

[Hidden]

Thank you for this information,

[Hidden]

you're welcome - hope it's useful to someone here anyway.

[cathie]

Thanks Tilda, I'll look this up.

C

[Hidden in reply to cathie]

[cathie]

That email address doesnt work. I pasted it as on the leaflet you copied.

[Hidden]

If you copy it from the poster and then use it to email then it should work I guess unless they printed it wrong? In which case I have just grabbed this extract from the PP slide presentation now so if you email this man - it is his research study that you would be helping with. If you could also mention that the information has come from one of the NRAS Scottish Ambassadors who attended his lecture in the Scottish Parliament as well that would be great!

Chronic musculoskeletal pain -

how do we turn the tide?

Martijn Steultjens

[e-mail]

Professor of Musculoskeletal Health

[Caza]

Tell us more Tilda x

[Hidden]

Um - well the consultant called Duncan Porter spoke about remission as the goal for RA, PsA and AS and autoimmune disorders and showed a picture of the Eigar as a metaphor for remission and explained how some years ago rheumatologists sat at the bottom staring up and hardly got beyond base camp. But now he believes we are about half way up the Eigar with the Biologics and combination of DMARD therapies. He spoke about Biologics and explained why they aren't used initially in the UK as part of the aggressive ammunition to throw at RA. He showed us graphs of treatment approaches in Norway and Finland (I think it was these two anyway). Norway use Biologics with RA patients from the start whereas Finland use combinations of DMARDs (triple therapy I think) and Finland was marginally ahead at achieving drug induced remission with the DMARDs being the initial treatment. So why add hugely to the strain on the public purse by rushing in with Biologics before finding out if a patient would respond well to DMARDs as many do?

He also explained that he had tried two approaches with early RA in his Glasgow clinic. The first was to see early RA patients himself every six months and review and adjust their medication accordingly. The second approach was to get rheumy nurses and junior rheumatologists to see these patients once a month for the first year in early RA clinics. The second approach made a significant difference to improving outcome for early RA patients.

Sorry I'm not being very articulate but these were the points that impressed me most I suppose. I had already read the Scot PHN report so that talk didn't make so much of an impression on me although he did explain that there isn't a method of evaluating whether points raised in the report were actually being used or put into effect - no method of auditing or appraising if you like.

The Dutch chap, Martijn Steultjens, was interesting too and spoke about Fibro and OA in relation to chronic pain because he pointed out that people with these conditions tend to fall through the net more than those with inflammatory arthritic conditions because there aren't the same drug options available for them. He also said that research so far shows that some forms of exercise are theraputic for those with OA - especially Tai Chi.

[Caza]

Thanks Tillda,that makes a lot of sense. My consultant has never seen me in a flare,he has asked me to have a blood test when this happens but I would have to make an appointment to see my GP to get a form then make an appointment at the hospital to have my blood taken which would take a week whilst in a flare. To have a clinic with nurses & junior drs where you could attend more often at the beginning of the illness to see how to tackle the disease,what suits individuals makes more sense to me.

It's great to hear that people out there are trying to tackle our illness. X

[Hidden]

Yes I felt this too Caza. But a few fellow ambassadors were keen to point out that this Glasgow hospital isn't typical - in case I get any ideas about moving to Glasgow! It's always reassuring to know that

some rheumatologists are setting precedents for best practice in rheumy units across the UK.

Rather ironically - since my rheumy was chairing this event - I wasn't seen for 8 months following diagnosis and MTX. We discussed this together after the talk and he agreed that this was far from ideal but then tried to tell us that my GP had been very helpful in keeping him regularly updated about me. But from the other side I had the GPs all telling me it wasn't their job and nor had they been trained to monitor their patients for active disease!

But at least I can always ask the GP or practice nurse to take my ESR if I'm flaring - your situation seems daft! Do you take photos of your swollen joints to show them? X

[Hidden]

Ps and I suppose too that this is one benefit of taking DMARDs such as MTX and Leflunimide and Sulfasalazine as opposed to just taking Hydroxy as you and I do. At least with the more powerful drugs you have to have your bloods regularly monitored?

[Caza in reply to Hidden]

Hi, yes I did take pics of my swollen joints, that's when he said that he thought I needed something stronger. He said he'd give me a couple of months to think about it. I went back last week,he was short tempered didn't look at me just the computer screen,he didn't listen to a word I said. He told me my bloods were fine & did I want another blood test,emmm not really. He didn't examine me, just said lets carry on with the hydroxy as its working so well. I was in & out in 5mins a complete waste of time. It isn't that I wanted stronger meds it's just that I'm scared that the RA might not be under control. Not sure if that makes sense, it's just that my toes & fingers are changing shape & I feel that I'm not doing enough to stop them. It's so stupid I'm quite a strong person yet in the consulting room I turn into a wimp. I can't talk to my GP because she says she doesn't know anything about RA & that's why I have a consultant. I give up x

[DrWhoFan]

Gosh that sounds awful, perhaps you could ask if there are any other rheumatology departments elsewhere. We have ask specifically to speak to our consultant, otherwise we get GPs who have an interest in rheumatology. Keep fighting! Anne

[Hidden]

Oh no Caza that's awful. I have had similar experiences with mine although he's never abrupt - just rather cheerily dismissive. I suppose the times he pays some heed are when my inflammatory markers are high and yet sometimes I've had some pain and swelling and he's just breezed over it because my ESR has been at 29 rather than 59.

I point to my changing hands too everytime now but he just shrugs and says no swelling = RA inactive. But how come I still can't clench them and one knuckle is permanently bigger than the others and my hands lie strangely and are always tight? He says its all in my feet now and they don't count towards the DAS 28. I don't mind as my ESR is right down and that reflects how I feel but not everyone is so well reflected by their blood markers I realise.

I know just what you mean that you don't want heavier duty drugs unless he convinces you that you need them - but if he hasn't checked then how can he actually know?

How about going back to your GP and explaining the situation from your perspective and asking to be referred to a difference rheumatologist? You shouldn't be brushed off in this way I feel?

Txx

[Hidden]

Ooh now I do have OA in both knees. Found that out when I tore my left knee cartilage about 4 years ago and needed an Arthroscopy. Plus I'm over 40... But I live in that 'peculiar' place...Geographically speaking, British Isles but politically and jurisdiction wise, an 'independent crown dependency' (there's a contradiction in terms if ever there was one!) Wonder if they'd be interested in me?

[Hidden]

I'm sure they would Jo-Jo but whether or not you could get to Glasgow with any ease to participate I don't know? I certainly couldn't, Glasgow takes a day to get to from here - but then I don't have OA in my knees (yet) fortunately. Tx

[cathie]

I have reservations about this remission thing. Did anyone raise the question about exactly what do we mean by it? Drug induced remission is great, but doesn't mean that you don't need the meds. My problems have increased significantly since coming off all meds and it's quite a struggle getting back onto treatment, a bit like starting all over againafter ten years of containment.

It's really helpful to hear about these debates though, it helps to know what these people are thinking

[Hidden]

Glad you found it helpful Cathie. I think the rheumatologists who spoke would be of the view that remission is almost invariably drug controlled at this point in time. Which is a big advance to how things used to be before Methotrexate and Biologics hence we are half way up the north face of the Eigar now?

After all anything else would be a cure and as far as I recall there was no mention that a cure has yet been found for any of the inflammatory arthritis's. But perhaps they were hoping that in your case they had reached the summit of the Eigar metaphorically speaking?

The only cases of spontaneous remission that I've heard speak of (not at this event a week ago) are when RA has run rampant for many years and occasionally burns itself out, having done a lot of colatarel damage on route usually. Or perhaps was misdiagnosed as RA to begin with when it was actually a Palendromic type of rheumatism where there is much pain but no eroded joints or lasting damage. Having read a bit about Palendromic rheumatism it can go away, remain as it is or turn into RA. I'm guessing that the term Palendromic could tie in with a longer running type of post viral or reactive arthritis or maybe Fibro or aggressive OA - but I don't know enough about any of these yet I'm afraid.