Different day - different diagnosis sort of

[Helzbells]

So ultrasound scan this morning at my original hospital.

This time the consultant was there. Never seen him before. No inflammation seen but fluid in a lot of joints causing pain. I said so I've not got RA. He said yes you have the bloods don't lie it's just at this point there is no inflammation. He says we know when people have had inflammation it leaves pain and stiffness when nothing is there. We also know some people develop severe pain and show antibodies but never develop inflammation. We also know whilst ultrasound is good it still isn't 100% apparently Birmingham conducted research in to people like myself and it was shown a one off infusion of biologics worked but this has now been stopped. He said the only thing they know 100% is that they still don't understand the disease.

[LizzieR]

Oh thank god someone sensible has seen you- so, as you know, and knew- you do have RA and the other doctors were wrong. Really pleased for you. Now tell the others how stupid they are xx

[Helzbells in reply to LizzieR]

Yes I was actually quite impressed. Apparently they link with Birmingham and he says they see a significant number of patients with positive anti-bodies and severe pain but no inflammation and that they are beginning to realise this cohort are still suffering the disease but they don't know why. He says they are beginning to realise that a lot of the markers they used to use to determine active disease aren't good enough and that it is a much more complicated disease than they realised. He said about 50% of people like myself 5 years down the line go on to develop significant disease others do not which. Is why I cannot be discharged. He said all they do know is that if no erosion is present at this stage then the prognosis in terms of long term damage to the joints is good. With patients like myself less likely to develop the severest damage seen

[LizzieR in reply to Helzbells]

That's great news. What a rollercoaster of a week you've had.

[Simba1992]

For once honest information about RA and how little in reality is understood. 😳

[Eiram50]

Thank god someone is mire on top of things! You've certainly been done a dis service but hopefully now they will seriously consider how best to support you and things can progress positively.

Best of luck going forward

Marie

[Lucy11]

'A one off infusion of Biologics worked'....What do you mean by 'worked'? Does that mean having only one injection or infusion stopped the RA in its tracks? No more progression and no need for more Biologics?

If that's the case why on earth would it be stopped? Surely the cost wouldn't be a factor as they would save loads on future costs if they were able to quiet RA with a one time use of Biologics.

To make another point. There are people who test positive for anti CCP and never go on to develop full blown RA. It's not to say the test doesn't lie it's just that clinical symptoms must also be present to diagnose RA. The level also seems to matter. The higher the level of anti CCP, the more likely it is to suggest RA

Sorry, just trying to understand what your doctor said to you.

[Helzbells]

The research trial has ended but the results were good so it's the trial that stopped apparently.

What he is saying is that you certainly can have raised anti-ccp and no symptoms and never develop

The disease but there is a significant cohort who have it raised and display all the symptoms but show no inflammation and it is this cohort they are looking at. It can be because inflammation was present and has left stiffness and pain, scanning is still not good enough to show microscopic inflammation or something else is going on but that someone displaying all the symptoms except obvious inflammation should not be let go

[Lucy11 in reply to Helzbells]

Thanks so much for the clarification .

I am one of those people. I have a high anti CCP plus the symptoms but never had raised inflammatory markers and very little noticeable inflammation.

I was given MTX and a Biologic as my doctor said they have known for quite some time that not everyone's inflammatory markers are positive, especially in early RA and some never go on to have raised CRP or ESR.

I was also given an MRI which revealed bone erosions but my X rays did not show any nor did Ultra sound.

I thought you said you get morning stiffness and other symptoms along with pain so what are they doing for you? How are they treating your mild swelling and stiffness? I guess what I'm asking are they just monitoring you now or are they going to offer other treatment for you as the DMARDS did nothing for you.

Do they know what caused the fluid in your joints if it's not synovitis?

It's kind of sad but do they just wait until bone erosions are present for this group of patients before they start treatment? I may be dimwitted and missed that you are receiving new treatment ( sorry if I missed that)...also what about the window of opportunity to possibly stop RA before it even develops?

[Helzbells]

Hiya no you aren't missing anything. They are going to speak to Birmingham about the trial but it will be trying to manage the symptoms not treat the immuno bit. I can't tolerate the drugs anyway.

[Lucy11 in reply to Helzbells]

Aha. Ok. I understand you can't tolerate traditional DMARDS but perhaps you can tolerate Biologics? I know I can't do anything higher than 12.5 mg of MTX but I have no issues with the Biologic.

If I were you I would find a way to beg, borrow or steal a way to get a one off of the Biologic! ( of course I would hate it if you can't tolerate it but it wouldn't last long.

If the trial went as well as you say it did then perhaps they will do another soon as I understand they must do several before it is offered as treatment.

I would be all over them as you are already diagnosed with RA. As you said, you asked the doctor and he said you had it--but perhaps very early days and thus would be a great candidate to try to stop it before it really starts?

I'm sure it's not in your hands and they will ask Birmingham for you but I personally would find a way to pay for it out of pocket--knowing what I do now about how it can progress.

I also know they are researching ways to stop RA before it sinks its teeth in and knowing you are so close to having that opportunity I would really hope for you it happens.

[Lucy11 in reply to Helzbells]

Were you on prednisone for a longish stint? Are they planning to prescribe steroids to you moving forward. There's a reasons why I'm asking...

[Helzbells in reply to Lucy11]

Yes I was on 5mg for 5 months but I developed a stomach ulcer. Did help my hands and feet but can't take it again cos of side effects

[Helzbells]

They don't know why the fluid is there as it can be caused by millions of things

[nomoreheels]

This was my point exactly, why weren't you seen by a Consultant previously? Thank goodness he was around this time. If you had been seen previously it could avoided all the upset this has caused you, & indirectly us on your behalf! We could have told him it's a complicated disease & they're still learning, we're the proof. If it wasn't we'd all be on the same med.

So where do you go from here? Can you request you're now added to his patient list given he seems more knowledgable about your specific form if the disease? Did he say you'd start treatment of any kind? You're still left with the pain of RD after all.

A great big phew!

[Gnarli]

You must be so relieved! Thank all that is good someone, a specialist, says that your diagnosis was right all along. Let us hope that the Registrar who so blithely dismissed all your symptoms and was so frankly incompetent, sloppy and abrupt got an appropriate slap on the wrists. An apology would be nice. An apology from certain others would be good too. I hope your treatment from now on is appropriate and effective. Huge hugs

Jan

[Helzbells]

Hi yes the registrar I think was young and over confident. The consultant has seen enough patients to know there is no one presentation of the disease.

Unfortunately treatment at this stage is around pain management as dmards for my cohort have proved ineffective. I shall certainly keep my eyes open for the one off biologics trial. My area will not fund it however

[hatshepsut]

Funding is not usually a factor in trials...the drugs are covered.

[Helzbells in reply to hatshepsut]

Yes I know what isn't covered is when other hospitals want to follow suit. The trial has ended at the moment. Those not on the trial who want to receive the treatment have to go through normal channels and at the moment it is not being funded for this group of patients.

[spzgirl51]

Hello Helzbells ,

I am so happy you are receiving sensible advise and have hope for a brighter future.

Best wishes xxx

[linda-5502]

At last an honest dr. It makes you realise all these registrars dont really know and that they tell you a lot of mistaken advice etc. You are so lucky to have someone who understands the whole problem do hope it carries on for you now trial has stopped xxxx

[FionaHerts]

Very relieved to read your update. Sense has prevailed, finally!