Doubts

[Nanabrodie]

I answered a post recently about how many people are misdiagnosed with RA and wondered whether I was in that category. I think I now realise that the rheumatologist is probably right as I have been to visit my son and his family this last weekend - the children are 4 years old and 18 months. After pushing the youngest in the buggy down a steep hill in cold weather the pain in my hands once I tried to straighten them was terrible and I am finding it quite painful in my hands wrists and arms up to and including elbows to lift her. Since I’ve been home my knees, when I go from sitting to standing, are really painful but okay otherwise, I guess that’s from kneeling down on the floor with them. Hopefully it will all settle down again now that I’m back home. I have noticed recently that the strength in my hands and wrists is diminishing quite quickly. I seem to be getting weaker since I’ve been on the medication 😕

[Hidden]

I had same symptoms for a few years, diagnosed as RA but now thought to have been Sjögren’s all along, which imitates RA very well.

[cheryls56 in reply to Hidden]

hi i have often wondered the same my ra does not show in my bloods when i have a flare up how did thay decide

[helixhelix in reply to cheryls56]

Doctors can feel your joints, as apparently RA swellings are distinctive. Plus how you describe how you feel can give them clues too. And then x-rays, and scans can show up clear signs.

[Hidden in reply to helixhelix]

My swellings in knuckles and finger joints were described as text book RA but the test is whether they develop into becoming erosive. But as the idea of early DMARDs treatment is to try and prevent this occurring - increasingly many of us don’t really know.

If you go on to develop Sicca dry eye and mouth symptoms or they start at the same time as bilateral pain and swelling then apparently the likelihood is that it’s Sjögren’s rather than RA because Sjögren’s otherwise usually comes with long-standing RA rather than at same time or soon after. The current president of the BSSA explained this to me last year.

[Mmrr]

I've still got doubts over my diagnosis, so far seronegative RA , OA , chondrocalcinosis, raynaulds.. ...I could go on....

The disease processes continue to develop so it's not easy to get an absolute diagnosis.

[Hidden in reply to Mmrr]

See my reply below re symptoms developing simultaneously or shortly before or after RA symptoms.

[Hidden]

I think in my case the evidence for a different rheumatic disease was in the fact that I developed Sjögren’s and Raynaud’s at same time as RA.

If we are treated early for RA it’s more likely to be controlled well enough to avoid erosive damage so x-rays may not disprove RA. But if we get dry eyes, mouth, lots oral cavities, breathlessness, nasal sores digestive probs etc with the bilateral text book RA type heat and swelling, it’s much more likely to be that our main disease is Sjögren’s or perhaps another mix of Connective Tissue Diseases.

The current president of the BSR explained to me that If it’s RA then the secondary dry eyes, mouth, Raynaud’s usually only attend long-standing RA rather than coinciding or arriving as simultaneous comorbidities or as slightly later as they did for me.

Lots of rheumatologists don’t seem aware of this - but this rheumatologist is also a Sjögren’s expert.

[Mmrr in reply to Hidden]

Twitchytoes, can I clarify what you are saying ? I was diagnosed with 'inflammatory arthritis' 2 years ago when i became ill, i also had dry eyes, the raynaulds I've had for years. I have a terrible thirst , but my mouth is not particularly dry. I have alternating constipation and diarrhoea ( might be mtx)

My foot problem started unilaterally, after 6 months both feet were effected. Hands deteriorated together.

I've previously asked about sjogrens, never tested, just my mouth looked at and because it's moist, told I don't have it.

I don't get the very swollen joints of RA, but they are very hot. Recently my diagnosis was changed to RA as my shoulders are stiff and sore.

Fatigue is overwhelming.

Sounds like sjogerns.

[Hidden in reply to Mmrr]

As I say, in my experience most general rheumatologists know very little about Sjögren’s or even Lupus compared to the common RA. When I was rediagbosed by lip biopsy my first rheum commented that there wasn’t that much difference?! The Sjögren’s expert (president of BSR) strongly disagreed with this, as do I. X

Ps On the other hand a diagnosis of RA is much more expedient from a treatment and understanding point of view?!

[Hidden in reply to Mmrr]

My mouth often doesn’t look particularly dry. It’s about quality of saliva not quantity. My nose and throat are always dry but my rheumy’s don’t look at these or my mouth. Anyway Sjögren’s is a multi system disease not just dry eyes and mouth!🙄🤷🏼‍♀️

[Hidden in reply to Mmrr]

Sounds exactly like Sjögren’s to me. My hands and wrists were most badly affected when it started but it went into shoulders, elbows, knees and feet.

[Simba1992 in reply to Hidden]

Funny thing is that I had the dry eyes problem long before RA. In the beginning it got worse then surprise surprise now three years post diagnosis, no more eye problems no dry mouth. Perhaps my treatment does have an effect on this front(?!) Who knows.

[Hidden in reply to Simba1992]

Me too. So used to them that I barely noticed but my optician was quite startled!