RA or Scleroderma or Both or what?

[AMDP]

I saw my Rheumy last week and he told me I am still a bit of a conundrum. While the initial diagnoses, two years ago, was RA, my hands and feet are behaving more like Scleroderma. If he is so baffled what hope is there? The only positive is that whichever disease it is I would be on the same meds but those are the same meds that don’t seem to be working. I know RA can take many forms- in as much as we are all individuals and it can affect us all with different severity, but surely these doctors should be able to tell one disease from another? I saw a Scleroderma specialist some time ago and he didn’t think it was that but he agreed I was a conundrum. I don’t want to be a conundrum, I don’t want either disease, but it would nice to know which I actually have as the prognosis is really quite different. Ax

[Hidden]

Morning!

Have you had an anti-CCP test? This would be a good indicator as regards your status with RA and its various travelling companions. Scleroderma is another auto-immune disorder and sometimes accompanies RA. There is often an overlap between the diseases making it very difficult for doctors to diagnose specifically and many of them are treated with the same medication, as you say.

Scleroderma and RA are quite different so odd a conclusion hasn't been reached. I can only think perhaps you have RA with secondary scleroderma?? In what way are your hands and feet behaving more like scleroderma? What meds are you are currently on?

Lyn x

[AMDP in reply to Hidden]

Thanks Lyn, yes I have had both a Anti CCp and Full ANA tests but both were negative. The skin on my hands and indeed my feel too has become very stiff and smoth, if that makes sense. The joints in the fingers of my left hand will not bend at all and my right hand is ver stiff- so I suspect going the same way- so are my toes. There was talk of CRPS, chronic regional pain syndrom but that has since been dismissed. Ax

[Hidden in reply to AMDP]

Hmm ... without wishing to suggest that I know anything more than I've gained from personal experience the stiffening (tightening?) and smooth skin is suggestive of scleroderma. I have a friend with this and she has it on her face as well as limbs making it very difficult for her to speak sometimes. As Mandy says the particular antibody is anti-SCL70, and you might expect this to have shown up in the ANA tests but likewise RA (unless sero-negative) would have shown up in the anti-CCP.

Do the joints not bend because the skin is tight? Or are the joints themselves stiff?

You might find this article useful. medicinenet.com/scleroderma...

Perhaps its time to go for a second opinion; you really need some help with this to get it correctly diagnosed and meds put in place to control it and to improve daily life.

Good luck Alex, let us know how it goes

Lyn xx

[AMDP in reply to Hidden]

Hi Lyn,

It is my joints that are stiff. My skin is smooth but feels as if it would give if my joints would only bend.

Yes there was no sign of anything in my bloods and I am sero-negative. It seems I have had all the relevent blood tests and have even seen a Scleroderma specialist. Who my Rheumy is setting up another appointment with. So we shall see. Ah well, guess I'm still a conundrum.

Thanks, and all the best, Ax

[Hidden]

I myself had a similar situation may years ago but it was with Lupus and RA, one consultant was saying Lupus the other RA.

I would also say ask about anti-ccp test as its much better in giving a clearer diagnosis of RA,whereas in scleroderma a particular antibody is looked for, anti-scl 70 I believe.

I agree with Lyn your consultant should have a clear picture of what is happening in order to make a diagnosis as even though Scleroderma is also an auto-immune system disorder there are clear differences between the two.

Good luck hope you get sorted soon.

Mandy xx

[AMDP in reply to Hidden]

Thanks, yes I have had both a Anti CCp and Full ANA tests but both were negative. Nice to know I'm not the only mystry anyway. Ax

[Sheila_G]

Hi. I can't give you any better advice than you have had but just wanted to wish you good luck x