Should I ask to see rheumatologist?

[lolacat]

Hi - rarely post here but do follow. I was diagnosed with seronegative RA 19 years ago. Initially treated with sulphasalazine, to which I reacted v badly but took for long enough to bring my inflammatory markers down before I stopped as I wanted to get pregnant again (RA started during my first pregnancy). I was then referred back to GP care and just on NSAIDs until a major flare up in 2008. I was put on methotrexate for about 8 months which gradually brought down my ESR and CRP again then weaned off and again referred back to GP care, and solely on NSAIDs.

I’ve seen rheumatologists since then as I developed a number of other problems (fibromyalgia diagnosed about 5 years ago, and hip and back problems which are being dealt with now through orthopaedics). “GP care” doesn’t seem to mean v much (although generally my GP is helpful). It’s been well over a year since I had ESR/CRP tested though generally the view is that if they are normal my RA doesn’t need addressing. But I have in the last couple of years noticed changes in the shape of my hand and toe joints. Classic boutonnière of thumb and ulnar deviation of fingers (more marked on right side but visible on both). And on my feet signs of claw toes.

Should I insist on seeing a rheumatologist? Because I haven’t seen anyone consistently over the last 20 years and those I have seen all in different hospitals i doubt anyone will be able to compare x-rays over time to fully assess the damage. Because of covid I haven’t seen my GP face to face to show him my hands/feet. Though as I am now seeing other services - have just had an investigative procedure on my back, due to have a steroid injection in my arm and hydrotherapy starting again - am hoping that the GP will be open for visits again.

Any advice v welcome from anyone who has these problems and has more experience with consistent rheumatology care than me. Is it too late (digits not yet badly deformed)?

[Marionfromhappydays]

Hi 👋,

Really lovely to meet you and sorry you are in this situation.

So just to clarify you've not been on any DMARD for years ? I have brain fog going on so might have read this incorrectly 🥴

[lolacat in reply to Marionfromhappydays]

No DMARDs since 2009 - just an anti-inflammatory (etoricoxib) for RA, plus a host of other pain medications - gabapentin, zapain, oramporph and occasionally diazepam. I coped well with methotrexate but my rheumy at the time was of the view that I should come off it once my bloods got back to normal levels. I still have the same daily sensation of discomfort and stiffness in my feet and hands and a lot of pain in my wrists but these are all put down to other things.

[Marionfromhappydays in reply to lolacat]

Yeah I would want to be referred back x

[LoneEra]

Short answer: yes, get referred back into rheumatology. I’ve done this recently after 10 years away from their “care”. They will have some notes on you still, but you’ll probably get assessed like a new patient again x

[janmary]

I would say you definitely need a rheumatologist appointment. If you’re needing that much pain relief it sounds urgent. Good luck ...

[Mmrr]

Yes, definitely you need to be under the care of a rheumatologist and not a GP.

[Wobbies]

Yes definitely. Nag your GP. In my experience you have to nag to get taken seriously.

[LoneEra in reply to Wobbies]

Definitely. I asked and asked for months and then sent an email off in despair and got a phone call back from the GP within minutes and an urgent rheumatology appointment!

[Ozzy]

As someone whose crp/esr has never been high, I was diagnosed through X-rays of my hands and feet and have dmards/biologics and celecoxib when needed for 14 years.

[lolacat in reply to Ozzy]

That’s really helpful to know re your crp/esr.

[ryn17]

So sorry to hear your going through these challenges but my answer is a definite yes, you should ask to see a rheumatologist who will explain better and offer some comfort.

[lolacat]

Thanks to all of you who have replied - seems a resounding response in favour of getting a rheumatologist appointment. If I can’t get a face to face appointment with my GP I might email him photos - of course he won’t have anything to compare them with except that the changes to the left hand tend to be a bit behind the right (was always the case with my RA). But hopefully enough classic signs that he will acknowledge I should have an appointment.

[LesJames]

I would insist that you see the Rheumatologist. It took 15 years to get told I had Psoriatic Arthritis as well as APS Sjogrens and Fibro. There is no marker for PsA and things like you describe on your hands and feet indicate it could well be. Are they on both sides of your body or not. The thing that clinched it for me was the development of Dactylitis ( Sausage toe)

[lolacat in reply to LesJames]

Hi - thanks for replying. Both sides on my hands, on my toes definitely more marked on the right. But that was always the case with my RA -started in right hand, then left, then right foot, then left foot. No signs of dactylitis though (I get v mild swelling of fingers to the extent I can’t wear the wedding ring I had made only 3 years ago but nothing anyone else would notice.)

[LesJames in reply to lolacat]

If you have been diagnosed with RA them you should be under the care of a Rheumatologist