getting a diagnosis

[dipi88]

Anybody here firstly misdiagnosed wth RA or PSA before they got a diagnosis of LUPUS. I have had joint pain multiple tendioinits and mild swelling for some 10 years, episodes of protein and blood in urine without infection- 2 ultrasounds done NAD. Used to get hives every summer that changed to burning rashes in hands and feet where skin could peel off. Unreal fatigue and then diagnosed with POTS SYNDROME. Also get episodes of daily headaches worse at night and lying down. Been giving every stupid diagnosis from hyper mobile to bad luck pain sensitive etc.

Last summer I had a month of feeling flu like and night sweats and vicious headaches where I could not lie down as pain worse.. Then I had red soles of feet slightly itchy it quickly got worse and my joints swelled to point could not move hands, feet shoulders, knees, elbow and neck . The pain was unreal. Finally somebody decided to do some bloods raised CRP, ESR, Negative ANCA and RA but strong positive anti CCP. Told new onset Rheumatoid arthritis unrelated to Last ten years. They gave me sulfasazine which made me feel like death and gave me rashes. The swelling in my joints has gone now and I think they are saying in remission without treatment apart from steroid injections. I think possibly its all linked and should I have more tests to exclude lupus. Any advice guidance appreciated before I see Gp. Thank you

[Hidden]

I was initially diagnosed with seronegative RA but now it’s changed to Sjögren’s with overlap CTD (limited scleroderma). My first rheum told me to “keep an open mind - things can change” and so I have - and yes things have changed.

I had same kind of summer as you this year - also very high ESR, CRP, facial rashes etc. Erythromelgia (EM) with Sjogrens was the cause of lots of my night sweats and horribly painful flushing last summer. It might be worth looking up EM as it’s rare and can attend any of these conditions very much including RA and PsA. sruk.co.uk/scleroderma/eryt...

When my first rheum said my RA was stable/ in remission and non erosive I looked elsewhere as I still felt very unwell and had a widespread, extremely painful small fibre neuropathy and Raynaud’s. So I was unsurprised when it later turned out that I had primary Sjögren’s instead.

It sounds like you definitely have RA plus some overlaps including PsA and Pots. Anti CCP and raised CRP are not associated so much with Lupus or Sjogrens. RA plus PsA are very complex diseases too - not just swollen joints as some rheumies seem to think.

I had a really terrible photosensitive rash and swelling with Sufasalazine. I am not on anything just now and it’s been two years.

[AimeeA]

It is common to have more than one autoimmune problem and they come and go in intensity. So it could be an accurate RA diagnosis but now you're also developing other problems. I got diagnosed with lupus but then came along with Raynaud's, sjogrens, and fibromyalgia. But they all come and go which is common in autoimmune and I manage them quite well with lifestyle changes. I make taking care of myself a top priority and avoid triggers. I absolutely avoid the sun which is a killer in lupus which is why symptoms can worsen in summer when sun is stronger and people spend time in the sun.. I just don't!

Describe your symptoms to the doctor and ask for blood tests to rule out related autooimmune diseases like lupus. Make lifestyle changes that help with autoimmune.. good rest, lower stress, stay out of the sun, eat nutritious food, avoid alcohol.

Get your vitamin D and thyroid levels checked. Problems with those are common in autoimmune and impact symptoms and overall health.

[Sekka in reply to AimeeA]

That was a good post to read and I too have taken in some of your suggestions!

Thankyou!

(R.A. -SJOGRENS -REYNAUD'S - HASHIMOTO'S.

I also have Orthostatic Tremor.

[dipi88 in reply to AimeeA]

Hi Aimee Thanks for the advice. I know anti ccp very particular to RA but what blood tests could I ask just to try and rule out any other issue. I was thinking ANA any others do you think . It could be just RA but I really feel I have had this years and this was just the worst flare I have had and if I had RA years then surely should have joint erosions by now. Unfortunately my consultant would not even have the conversation with me with doesn't install much faith or confidence . I wish doctors would just blinking listen sometimes. I know they are busy and over worked but she really could have explained things lot better.

[AimeeA in reply to dipi88]

You must see a rheumatologist for an accurate diagnosis.

ANA and anti-Smith DNA and several more are usually ordered if they suspect lupus. I'd share your symptoms with your doctor and ask if they'd run the tests, but often they will not just run tests because you ask for them because they are expensive, unless they also believe your symptoms indicate lupus.

Even without a firm diagnosis you can make lifestyle choices that can help a lot--no sun, no sulfites, ample rest etc.