Wrong diagnosis?

[KazzyALD]

Hi everyone, my friend & I we’re both diagnosed with RA about 16 years ago. My friend is on Methotrexate, and has just been to see her consultant. He is now questioning whether she has actually got RA. He’s saying this because he says there’s no evidence of any erosions. She suffers with pain, and sometimes struggles with getting up in the morning. Thankfully, she hasn’t struggled as much as I have over the years, but surely that’s just a good thing. A while back she had her dosage of Methotrexate increased. My question is, has anyone else experienced this? Has anyone’s consultant questioned your original diagnosis?

[juneann]

Are you sero-positive or sero negative and the same question for your friend as it can make a difference? Many auto immune diseases often require the same drugs but I guess all this will be checked.

[KazzyALD in reply to juneann]

Hi Juneanne, I’ll be honest, I really don’t know. I don’t know if my friend knows, but I’ve never heard of these words. I’ve been told I have severe RA. I take Tocilizumab, by injection.

[helixhelix]

I think it's generally a good thing that consultant's do consider options, and not just dish out the same thing endlessly as RA and the other AI diseases are tricky beasts. And people can get things wrong. Is he/she suggesting a different diagnosis?

But saying that it's because she has no erosions is very odd, after all we take the drugs to stop us getting erosions!

What have her blood test results been like? Is there evidence of inflammation?

Presumably her MTX was increased a while ago in response to something - her saying she was in pain or the blood tests? Did it make any difference to her? Because if she has no obvious signs of inflammation, and increased MTX made no difference to the pain, so the pain is not being caused by either inflammation or the damage from erosions then perhaps the consultant is thinking that what she has is not an inflammatory disease like RA?

And yes, this has happened to other people on here, but I can't remember who - sorry. Perhaps they'll pop up and tell you.

[KazzyALD in reply to helixhelix]

Hiya, thanks for your reply. She’s definitely had inflammation. Tests have proven that, and that’s why they upped he MTX. I’ll copy what you’ve send, and send it to her. Thank you x

[AgedCrone]

Can your friend see a new rheumatologist for a second opinion? Did her present rheumatologist make the original diagnosis?

Usually when you change rheumatologists the new doctor takes a complete new history and does more tests to ensure the diagnosis she presents with is still current .

Maybe have a word with her GP For advice?

It must be very unsettling to think she's been taking drugs for so long that she may not have needed!

[KazzyALD in reply to AgedCrone]

Hiya, yes I’ve suggested a 2nd opinion. Like you say, it’s very unsettling, especially where she has had skin cancer since being on MTX, and was told that being on the drug has probably caused that. Thanks for your reply x

[Denise64]

Hi

I wasn't diagnosed with RA for a long time .

didn't show in any bloods at all, I had poly inflammatory arthritis years ago same symptoms as I have now, but this went away with Sulphazalazine.

Then year's later it's back but worse n this time not showing in my bloods so not the correct treatment given.

It was eventually found in a biopsy taken from a routine operation on my knee . That is when they found my RA .

RA very odd ilness.

Now on Benapali n really hoping for good things . there's a cure out there for all of us but it's getting the right diagnosis.

xxx

Denise

[KazzyALD in reply to Denise64]

Thanks Denise. That’s really interesting, obviously not much fun for you though. I’ll tell my friend. Thank you

Karen x

[Zoppy89]

Hi KazzyALD, I was diagnosed 5 years ago. But when I moved hospitals my new co sultans did questions the diagnosis as my RA was so under control and I have luckily had no erosions. My inflammatory markers are always very high and I do get flare ups. They have kept me on methotrexate and increased my dosage. X

[KazzyALD in reply to Zoppy89]

Thanks Zoppy89, I’m with you on this one, the MTX is clearly working.

Karen x

[DelicateInput]

Surely there would be evidence of something? Could she ask for an ultrasound to be done. This is cheaper than an MRI and less distressing (as I found MRI nearly murder) so easier to get on the NHS.

It should show up a lot, like synovitis, synovial thickening, effusions, increased vascularity (where RA lays down extra blood vessels which penetrate the synovium - no other condition will do this). An added bonus is that the sonographer or radiologist talks to you while the images pop up on the screen and you get the information first hand without waiting for a report and often more information than is contained in the report direct.

[KazzyALD in reply to DelicateInput]

Hi, thanks for your reply. I’ve never heard of this before. I’ve copied & pasted your reply to my friend. Thanks again.

Karen x