Wavering

Starburst

Not sure if anyone is reading on this hot sunny day but I think it will help me to talk it through anyway but thank you if you do get through my rambles.

I was diagnosed with an unspecified inflammatory arthritis in 2009 and was told, my condition resembled lupus. However, my current rheumy disagreed and diagnosed me with seronegative RA in 2011. I saw a different rheumy a couple of weeks ago (as my usual was off sick) and she suggested anti-TNF treatment. I had been getting my head around this when I got a letter from her stating that she felt my diagnosis of RA was perhaps not quite right which is what I have been saying for over 2 years. :?

I have repeatedly queried lupus but my ANA was negative in February 2011 and the clinic are refusing to repeat the test as it is expensive, apparently! I also know that there are other lupus antibody tests as well as other tests to diagnose/rule out any other types of autoimmune arthritis but again, due to cost, they feel this is pointless. (I had a whole battery of tests to identify which type of arthritis I have back in 2009 and nothing showed up except a high ESR). I have also repeatedly queried PsA as I have psoriatic nails (confirmed by 2 dermatologists) and I seem to fit the profile for PsA a bit more than I do for RA but to no avail.

Being a strong advocate for my own health, I feel that cost is not a good enough reason. It's been 4 years and we're still not any clearer. I feel unsure about going on anti-TNFs if the diagnosis is not more certain. I appreciate that it may not be 100% certain but more certain than this!

I have private insurance that will cover me having another opinion but I'm not sure if that's a pointless exercise. It was suggested that I ask to be referred to the St Thomas Lupus Unit but my Bupa cover does not include central London consultants. I just don't know what to do. All I know is that my joints have shown signs of erosions (as evidenced by MRI scans) and at 25, that scares me.

salamander

You are in a tricky position Starburst and I sympathise with you.

The way I see it is you have several choices - or you could do all of them!

1) Go for the private consultation and get the tests you need and then go back to your rheumy with results

2) Ask your GP to refer you to Tommy's

3) Put it to your rheumy that repeated tests might be the cheaper option in the long run, particularly in relation to your concerns about joint damage etc. Is rheumy saying if you haven't got RA they are not going to give you anti tnfs? If so, it makes sense for them to run the tests again to diagnose what is actually going on?

Starburst

Thank you for your helpful reply. From the letter, it appears that they want to press ahead with cimzia even if my diagnosis is not firm. I have spoken to someone really helpful from the NRAS helpline who said this type of drug can help to control disease activity in other types of autoimmune diseases, so that trying cimzia may actually be a good idea regardless of diagnosis. That makes sense to me. I'm still considering my options.

suzygirl

Hi, Lupus does NOT cause joint erosion's, therefore the NRAS advice is sound. It maybe you have a Lupus/RA overlap or Psa, however the disease needs treating now.

The ANA test is an indicator of SLE and other autoimmune diseases if it is negative, they tend not to do the other more complicated antibody tests. Your RF factor can be positive in SLE and Sjorgens also. If you want SLE ruled out call Lupus Uk and ask to be referred to a Lupus specialist in your area.

I would ask my rheumatologist about my diagnosis and ask why you do not have Ra, and what you have taking into account your nail changes. Usually they welcome interest in your healthcare.

If you would like more info on SLE which I have amongst other things, then let me know or PM me.

barbara12

I would certainly question all that ate treating you, they cant just say we dont think it is RA without an explanation.
Sorry I cant help with the meds, but please let us know how you get on, and I do wish you well with getting some answers and the right treatment x

Boomer13

Hi Starburst;

I sure do empathize with you; your situation really mirrors mine in a lot of respects.

From my recent reading and diagnosis of PsA, I understand that psoriatic nail changes are very commonly seen in persons with psoriatic arthritis.

I went through a long period (7 yrs.) of wavering diagnoses: variously seroneg. RA, AS, lupus, fibromyalgia, reactive arthritis.

My PsA was diagnosed from a small patch (a few cm) of psoriasis on my foot, so I don't understand why this diagnosis hasn't been pursued for you if you have nail changes consistent with psoriasis. This seems like a pretty big clue.

On the lupus side do you have any internal organ abnormalities that would suggest lupus? Skin rashes? If not, then the lupus consult may not be worthwhile. I would echo suzygirl here that lupus does not cause joint erosions.

I have skin rash, but it is not like lupus or psoriasis (except the patch on my foot). Still waiting for an answer here, but at least I'm getting somewhere with the joint pain diagnosis. My rheum was confounded by my array of symptoms too and hasn't ruled out an overlap syndrome. As suzygirl says you need to be treated regardless, a firm diagnosis will come but it's important if you are seroneg., with joint erosions that you get started on a treatment. I guess the good news is that anti TNFa therapy is appropriate even without a firm diagnosis, esp. if you have joint changes. You have probably done this but, Is it possible to seek another rheumatologist opinion, maybe a private one?

Sorry you are having difficulties and I sure do empathize and offer my support and hugs ((())). It's horrible not knowing what you have. I was fully against changing doctors but in the end this is what lead to answers and my diagnosis. You are right to assume a self-advocacy role.

Take care and please post an update when you have one,
xxAnna

suzygirl

The ANA test is an indicator of SLE and other autoimmune diseases if it is negative,

Sorry, the above should read


The ANA test is an indicator of SLE and other autoimmine diseases, however if it is negative . . . .

hope that makes more sense!! :roll: I was in a rush earlier.

Lupus does not always causes organ abnormalities, the criteria for SLE are 4 out of the following 11

http://www.thelupussite.com/dxlupus.html

Starburst

Thank you for your helpful replies. I feel a little clearer in my head now.

I see my favourite rheumy nurse (I know you're not meant to have favourites but she's so lovely, always remembers random little things about me) and I'm going to politely ask if my ANA could be repeated. If it's negative, at least I'll feel more at ease. I'll mention PsA again but as has been said before, it may not 100% matter. At this point, things are so bad, I just need to get whatever it is under control! Regardless of it's exact name, it's real beast. To answer your questions - I do have some lupus symptoms - mainly skin and ulcers. I am wondering if I have some kind of autoimmune disease overlap. :?:

Thank you again for being so helpful and for being my sounding board. xx

dreamdaisy

My first label was a vague 'auto-immune arthritis', only later was that changed to PsA. The treatment, however, remained the same. During that time I had two anti TNFs, now I'm on a humira/meth/sulph combo. To a certain extent the label doesn't matter but it does help us in knowing what is what. Keep asking questions, Starburst, you need to be as sure as possible in yourself before you embark on these meds. DD