Hello - newbie going through initial stages of investigations

ljt79 Member Posts: 9

Hi all,

I wanted to say hello as I've found the posts here, as well as the main website, really helpful over the last few weeks.

I've had various, relatively low level but disruptive, systemic things going on for about 9 months (post-covid), and migrating joint pain kicked in during October (the palindromic rheumatism page is what led me here - describes my experience so well!). I have a family history that includes RA and last week I had a blood test back with high levels (363 units) of IgG anti-CCP3 antibodies. I've only had a couple of occasions where there has been visible swelling and redness so it's hopefully not too bad yet (given I can cross my fingers, I will ๐Ÿ˜‰ )

I don't want to prejudge things too much (seeing the GP next week), but am also trying to mentally prepare for the likelihood of either a PR or RA diagnosis at some point. At 43, I'm having days where my hands are less useful than my 80 year old mother-in-law's. As I'm someone who's always been stronger than I look, hyper-independent and pretty active, it's something of a shock to the system. I also have ADHD, so have been massively hyperfocussing on learning about inflammatory arthritis (possibly not very sensible, I know... trying to behave!).

I am going to ask for a referral if it's not offered straight away (pretty sure I tick the NICE guideline boxes). My local center is the RNHRD in Bath, which is great, but the routine referral waiting time for them is currently 6 months...

I'm not too bad between flares, but the longest gap I've had so far has been about 3 days (my body was very kind and gave me Christmas day off!), so the fatigue is pretty constant, but not so bad I'm in bed. I went to see my physio last week and he's given me some exercises to try to help regain some strength in problem areas. I've been seeing him intermittently for ages, mostly for running injuries, and although he's in private practice he's got a long history of NHS work and is well versed in supporting people with arthritis. Feeling very lucky to be able to afford one off visits like that at the moment!! Now I just need to do the exercises ๐Ÿ™ˆ

Anyway, that's enough of an overshare for my first post ๐Ÿ˜… It's nice to be here and thanks to everyone who posts and comments - it's so helpful to those of us who are new to all this!



  • MammaBuckz
    MammaBuckz Moderator Posts: 31

    Hi @ljt79

    Welcome to the versus arthritis forum.ย You'll find a friendly bunch of people with different types of arthritis who are happy to help if they can.

    You say you have similar symptoms to palindromic arthritis, with a family history of RA and youโ€™d find it helpful to hear from other members.

    It sounds like you are preparing yourself for your diagnosis and future treatment well, sometimes, understanding the condition can be half of the battle.

    Its great that you have found the website and posts on here useful and hope the information will continue to be helpful:

    Thought you might find this particularly helpful ๐Ÿ˜‰

    Good luck and best wishes for your arthritis journey.

    MammaBuckz - Moderator

  • ljt79
    ljt79 Member Posts: 9

    Thank you! ๐Ÿฅฐ

  • stickywicket
    stickywicket Member Posts: 27,295

    Hi Lisa and welcome from me too. I have RA, diagnosed very easily many years ago. I think you're talking (writing?) a lot of sense.

    If you look at the Coronavirus forum on here, you'll see that quite a few people have started with some form of inflammatory arthritis after getting covid. Indeed, long before covid, it was known that, with inflammatory arthritis, there is often a genetic predisposition and then a precipitating factor.

    When you talk to your GP do give your family history and, if you've any photos of inflamed joints, they would help too. Here's the tough bit. You say you have an excellent rheumatology hospital in your area but the waiting list is 6 months. Normally, the earlier the diagnosis and start of treatment with DMARDS, the better the outcome. But, excellence attracts excellence so the docs are likely to be better at the good hospital. Certainly, for an operation I'd prefer to wait. But, to start treatment? I just don't know.

  • ljt79
    ljt79 Member Posts: 9

    Thank you, I'd been thinking along the same lines. I'll see what the GP says as there may be a chance of an urgent referral - we shall see!! I've been keeping a diary and taking pictures when there's anything visible, so hopefully I'm giving myself the best chance ๐Ÿคž

    Thanks again for the welcome!

  • Woofy
    Woofy Member Posts: 133

    Hi Lisa. Welcome. I am newly diagnosed with R A, and was at the Rheumatology dept Bath today for review.

    hopefully you will be referred quickly. They are lovely at the department. Good luck.

  • ljt79
    ljt79 Member Posts: 9

    Hello, I thought I'd report back that my GP has referred me to rheumatology this morning, so fingers crossed for a relatively short wait โ˜บ๏ธ

  • Woofy
    Woofy Member Posts: 133

    Brill. Hope itโ€™s really soon. Let us know how you get on. Good luck.

  • Platt
    Platt Member Posts: 17

    Hi all, thought it would be nice to talk to people who are going through stuff like me. Suffered with my knees for years, more cortisone injections then i can count, but for the last 3/4 months my hips have been causing me terrible pain - naively went into docs asking if they could treat my hips the same , only to be told the whole hip thing is far more complex. Been to see 1 specialist, referred to another. Anyone know how long this can take? Had to ask for strong painkillers which dont mix well with work for me. Really struggling atm. Ty. X

  • Sharon_K
    Sharon_K Member Posts: 460


    welcome to the online community. I can really understand that you are struggling at the moment, hip pain is difficult to manage. IUnfortunately it is difficult to know how long it ewill take you to get any information from your specialist. If you can contact them , that might be a way to find out a bit more. You might find this information about hip pain useful.

    Also this one

    I am sure our members will also share their experience with you. Let us know your news

    Best Wishes


  • Platt
    Platt Member Posts: 17

    Thank you for your advice, the consultant i spoke to last week did indicate it could be something else, i suppose having the knee and hand issues which are known arthritis, i immediately suspect the same when my hips give out! I have a further MSK appointment now, lets see what happens - cant say im overly hopeful, the answer seems to be stronger painkillers which really doesn't work for me. Be good to know what it is though so glad im getting it looked at. X

  • ljt79
    ljt79 Member Posts: 9

    Afternoon all!

    I thought I'd let you know that I've had my referral through (feeling very lucky!) and am seeing rheumatology on 20th Feb. I think being in the magic early inflammatory arthritis window (symptoms for more than 6 weeks, but less than 6 months) is what has helped. Hopefully, it won't be too long before I know what I'm dealing with. I know it's a long road, but at least I'm in the system now โ˜บ๏ธ

    I found out this weekend that my great-aunty's RA started with a palindromic presentation similar to mine. That's good to know in some ways, but perhaps less so in others. Now I have my appointment, I'll have to do my best not to dwell and just roll with whatever happens (unlikely to be successful with this, but I can try ๐Ÿ˜…).

  • ljt79
    ljt79 Member Posts: 9

    Well, even though I tried to be realistic going in, I can't help feeling a bit flat after my initial rheumatology appointment today. The registrar started off thinking it would be a straightforward RA diagnosis. I had gone in knowing that was on the cards, but thinking PR was far more likely. I don't think PR was something she was familiar with, but I know it's both uncommon and also a diagnosis of exclusion.

    She spent a decent amount of time with me, was very patient with my OTT research and prep, and I did feel listened to. I'm absolutely not being critical of her.

    I was sent to get hand and feet x-rays straight away (only had to wait half an hour - Impressed!) and she's angling for ultrasound as well. She put me down to come back in 3 months and I'm to call if I get a bad flare so they can try and scan at the point of the flare.

    Overall, I couldn't really ask for more, I think I'd just been hoping for a bit more certainty (and possibly some better pain relief). I know that was probably a bit optimistic.

    Anyway, just needed to vent. I'll await the results of the x-rays and see where things go next.

  • ljt79
    ljt79 Member Posts: 9

    So... already an update! Just had a call from the registrar and my x-rays are clear (phew!). Following a discussion with the consultant, I'm going onto their Patient Initiated Follow Up programme, where I will be seen again in 2 years. In the meantime, my GP will be advised to give me Naproxen to manage the pain and if my symptoms get worse/increase in frequency I can call the helpline and I will get an appointment within 10 days. Because PR is suspected, and that can develop to RA (particularly with raised antibodies), the main aim is to spot a shift toward RA and then deal with that if it happens.

    Until I see the letter, I've realised I'm not sure if I have a diagnosis yet (fuzzy brain). Still, she seems to be on the case, so either way I feel I've at least got support if I need it and fingers crossed the Naproxen will actually help with the pain.

    It's been an emotional roller coaster of a day!