Waiting for first rheumatologist appointment

[Parakeet88]

Hello,

Back in April I posted about possible RA in my fingers. Mostly due to CV-19 delays it's taken almost 10 months, three blood tests and an ultrasound on my hands to determine that yes, I do have mild arthritis in my middle three fingers of both hands. All my blood tests have come back negative for RA but I was wondering if it's likely to be seronegative RA.

I'm awaiting an appointment with a rheumatologist when I'll be able to ask more questions, but I've been told by the GP that the referral could take a long time due to Covid delays. As it's already been almost a year since my first (noticeable) symptoms I'm getting a bit anxious about it dragging on longer without treatment. Once I started reading up on it a bit, other RA symptoms began to make sense to me (general aches and stiffness, randomly having flu like symptoms.) Has anyone gone down the private route and can offer any advice?

I wanted to ask about a specific symptom as well. I get itchy, slightly painful raised red patches on my fingers, but not the joints. They're like chilblains really, but accompany the swollen, stiff fingers. Is this a common symptom?

Thank you

[Sunnyseas]

Hello Parakeet88 - I’m sorry that you’re having to wait so long for an appointment. I’m not an expert so couldn’t comment on your symptoms but I did go private initially. Ask your gp for a referral letter to see a private rheumatologist, they may also be able to provide a recommendation. Or look up who the consultants at your local hospital and see if they have a private clinic. I hope this is helpful & hope you know where you are soon, ss

[Jaxine]

Hi there,

I can only think about my initial symptoms of being diagnosed with RA and it was horrendous! Semetrical with regards to pain and swelling. Debilitating tiredness, but so horrid I could hardly move. The pain was like nothing I have ever experienced I thought I had torn every ligament in my body so much so I literally crawled into a&e. I feel your pain but only more tests will uncover the problem. I would say if your test came back negative it s unlikely to be RA. Which is a positive result for you believe me! Good luch and best wishes

[helixhelix in reply to Jaxine]

Jaxine, that’s not true. About 40% of people with RA have seronegative RA.

There are two different elements in blood tests used for diagnosing RA. The OP said that her tests were “negative for RA” which usually describes the specific antibody tests which are rheumatoid factor and anti-CCP, and if you don’t have them it’s called being seronegative. But you can still have RA.

The other element is the inflammation markers, shorthand is ESR and CPR. These aren’t specific to RA, as even having a cold can raise them. However the vast majority of people do have raised levels on diagnosis, but there is a very small percentage of people who don’t.

[Monkeysmum]

Hi Parakeet, sorry to hear about the problems you are having progressing diagnosis in these difficult times. I’m sero-negative, diagnosis took about three years after first symptoms appeared, and only finally diagnosed by seeing a rheumatologist privately (my GP was less than helpful!) on the recommendation of a foot and ankle surgeon I was seeing. Quite pricey process though, paid about £200 for private appointment and another £200 for report (more if you need scans doing) but thankfully he then arranged for me to be on his NHS list going forwards. Your itchy patches on your fingers sound similar to what I get on my toes. I have always associated these with the Raynauds syndrome which I am also diagnosed with - which in itself is definitely more active when my Rd is playing up in my feet. Hope this rambling is of some use, one tip I would definitely recommend at this stage is to keep a diary of your symptoms including all the general ones, and take photos of swellings so that you have plenty of information to share with rheumatologist when you do get to see one. 😀

[helixhelix]

If you can afford it it, then it could be a good way forward. As sunnyseas says try to find one that also does NHS work so you can transfer to their NHS list.

And look up psoriatic arthritis to see if that makes more sense of your symptoms (like RA with a skin rash).

[Joanneforbes]

I feel your pain I was officially diagnosed last year but it took a while as I had Seronegative RA it doesn’t show in bloods ! Just a bit inflammatory so had to have X-rays etc finally an mri showed up the R.A. in my hands . Treatment is same I believe I’m on my third one as my liver couldn’t cope .... it’s a long patient road I’m still waiting for the magic medicine 😂... and Covid has certainly not helping been waiting 6 months for apt and I’m in the system! Now gone to phone apt 🤦🏼‍♀️ Keep going hard I know but we are R.A. worriers 🤗💞

[bunnycaramel]

Hello I’m sorry that you have waited a long time.

It took along time for me to have my first appointment in normal times so this length of time is very much the normal. I really hope you are seen soon. It looks like you may have sero negative RA if your bloods are negative but this is for the specialist to confirm at your first appointment.

All the best

[Parakeet88]

Hi, thanks so much for all your replies and tips - this is a really supportive forum. I'm keeping a diary of symptoms as suggested - now all the random ailments make a bit more sense! I also have Raynaud's disease so I did wonder if it was connected/affected.

I may explore the private route. My symptoms are luckily not severe at the moment, but I've read many times about how important it is to start treatment early to reduce irreversible damage, so keen not to leave it too long.