First Rheumotology appt

Hi, i am not diagnosed but have been referred by my gp who has done bloods etc and believes i have RA.

I have y first rheumatology appointment in january and i am just asking really what to expect from it ? is it a long drawn out process or is it a quick chat then your out ? is there anything i need to do to prepare myself ?

many thanks

20 Replies

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  • I'd probably write out a short case history - just bullet point your major symptoms. I'd add any other medical conditions you have (if any - I had a few) and write down exactly what medicines you are taking.

    When I had my first appointment the rheumy spoke to me in detail about all my symptoms and how I was feeling, from what I remember she had a feel at various parts of my body, hands, fingers, knees etc

    She explained what she was planning on doing with me - a course of steroids which I started that day. I could have had an injection but I opted for pills and should the steroids make a difference I would start on hydroxychloroquine too.

    The steroids made an enormous difference in just two or three days but I didn't realise until my copy of her letter to my GP came through that I could have been taking the steroids along with the hydroxy so I was four weeks into the steroids before I stared the hydroxy which itself can take a long time to kick in. When I read the letter I realised that maybe I ought to have been taking both drugs together so I phoned my GP who got that organised for me.

    I found it quite a good experience on the whole, I also have thyroid problems and I often came away from my endocrinologist visits feeling a bit 'flat' but not with the rheumy.

  • That's really informative thank you, its interesting because quite a few people with RA seem to have thyroid problems as well (myself included - underactive taking 100mg levo).

    I have been on steroids for the last 4/5 weeks (prednislone) but GP wanted me to wean myself off them which i have been doing and now i am not on any steroids just taking naproxen (and omeprazole which i believe is to protect my stomach from naproxen). Also identified in bloods a lack of b12 and something else (cant remember what) which means ialso take folic acid and some other B12 tablets ) I feel like a walking chemist ha ha.

    My pain is mainly in my wrist shoulders elbows and fingers, elbows and shoulder i feel the most pain in :-( x

  • I managed to get off the omeprazole - I only take the odd one these days.

    I think it might be because I went ont a GF diet to try and calm the Graves Disease antibodies I've got. I also completely cut out fizzy drinks - no more Diet Coke and worse than that - chocolate. Fruit and Nut were two of my five a day. The arthritis is just one of several other pesky autoimmune conditions. I think that going gf has helped, the antibodies are reducing and I've only been gf since mid September so I'm hopeful.

    Watch your blood sugar levels though because I've just tipped into T2 diabetes - my doctor is hoping it has been the steroids that did it and once they are out of my system my blood glucose will go back to normal. At the moment I'm seriously watching what I eat and getting as much exercise as I can - at least a brisk half hour walk every day,

    I was warned about the side effects of the hydroxy which I already knew about. - but no one mentioned that steroids can affect your blood sugar - I was obviously succeptible which was annoying considering how much I had cleaned up my diet. I hate to imagine what things would have been like if I hadn't - I was speaking to a friend today who has been on a huge dose of prednisolone, much more and for much longer than I was and her blood sugar was fine.

    So many things to be aware of aren't there.

  • Depending on the rheumy and your symptoms/blood test results you might not get a definite answer there & then. Sometimes they'll ask you to have further blood tests and x-Rays or ultrasound before making a definite diagnosis and starting you on a treatment. So don't expect miracles! But as fruit&nut ase says, you might get a steroid injection at least (I prefer the injections as find they're less of a roller coaster than the pills).

    As well as writing things down, do take photos of any swollen joints you have as quite often they vanish the day before an appointment. Many of us also stop taking painkillers and anti-inflammatories a couple of days before so they don't mask things.

    In terms of preparation, best underwear perhaps in case they examine all of you. And a hankie - even tho' you think you're prepared for a diagnosis of a chronic disease it can still surprise you.

    And a pen and paper so you can note things down. Also ask for print out of any test results as this can help you afterwards when you try to digest all the information.

    Good luck.

  • I think it is a good idea to stop taking painkillers etc. I'd forgotten I did that too. I had a very cold and wet three weeks in a motor home on the Outer Hebrides before I got to my rheumy, So although it was an awful holiday - when your body hurts and every part of you aches constantly no amount of beautful scenery makes up for the lack of comforting hot weather you get in the south of France - but at least I was suitably 'creaky' when I reached the rheumy!

    So apart from holding a lot of rain - every cloud had a silver lining as they say.

    I wore the good undies too but didn't have to undress and yes, if you aren't a complete wimp like me about injections (I can let them take any amount of blood though) if you get the choice I think an injection would be much easier than the ever reducing pill regime I was on.

  • i am currently only on naproxen which when i return to work in january will probably not really be enough anyway, but if i dont take anything it may impact my work. do you think i will be ok to just carry on with that ? or not ?

  • Hi - I was I the same situation as you are five years ago. It took a while for me to have my first rheumatology appointment so my GP put me ona DMARD called Sulfasalazine. Unfortunately I had a severe allergic reaction to it so after that he gave me a steroid injection. This masked what little swelling I had so the rheumatologist had to wait for another four months - by which time I had clear synovitis and my inflammatory markers were very high.

    Four years on and I am now in remission from RA, off steroids and DMARDS but still have other autoimmunity going on that is less easy to pinpoint or treat.

    I am also hypothyroid, also on 100mcg Levothyroixine. I think being hypothyroid and having B12 deficiency makes autoimmunity easier to confirm - but not necessarily to diagnose RA specifically unless you have a positive anti CCP (which generally only rheumatologists can request) and/ or very clear synovial swelling. Sometimes under-treated thyroid disease and pernicious anaemia can cause symptoms that overlap or even mimic some RA symptoms. They do say that once one autoimmune disease comes along the likelihood of others joining in is higher and certainly for me this has been the case - but none in a severe or erosive form thankfully.

    My advice would be the same as others ie short bullet point list of symptoms - photos of swollen finger joints and wrists if you have any and avoid painkillers and anti-inflammatory drugs for at least a few days before your appointment so there's nothing to mask your symptoms or bloods. Best of luck.

  • When i had bloods done at the doctors he said that they showed inflammation, would he be referring to ccp markers? do you think. i havent noticed much swelling just pain.

  • That makes sense Twitchytoes and explains why when my GP did loads of tests my rheumy requested anti CCP for me and I had it done in hospital. 😊

  • No this would probably be your ESR and CRP - both being inflammatory markers - and your Rheumatoid Factor too possibly. The anti CCP is the more specific autoantibody test for RA and if it's positive and you have symptoms then it makes RA a much more clear cut and easy diagnosis. 40% of people with RA are negative though and about 30% are negative for Rheumatoid Factor too. This is called Seronegative RA and diagnosis of this type is more dependent on establishing the presence of synovial swelling in your joints - especially fingers/ knuckles and wrists. This is why I would say that it's very important to avoid naproxen I the run up to your first appointment. Sorry if this means you have to suffer for a few days and affects your work. But the longer it takes to get a proper diagnosis the longer it might be until you are put on proper treatment so probably worth enduring the pain for this reason.

  • OK i may just have to do it then, i work with children with special needs thats the only reason i was reluctant as it then makes me less able to support them, if i am in pain :-( x

    thank you

  • I know its a dilemma many of us have.

    Do you have a sympathetic boss perhaps who would understand and give you a few days off work beforehand? I told you about the steroid injection which was still masking my symptoms some six weeks later and therfore delayed my diagnosis by four months. I didn't know that taking ibuprofen would mask swelling either and, although my inflammatory makers in my blood were high again this wasn't enough for the rheumatologist to make a definitive diagnosis. The next four months were a bit of a nightmare so I always explain my experiences to newcomers to rheumatology now!

  • I will just do it anyway and see how i get on, she is very understanding as she has RA herself which might help if i am struggling.

    thank you very much :-)

  • Well that's good to have a boss who knows what it is to have RA - although not for her of course! X

  • Read up on it and write down the questions. The NRSA and NHS has some great info. And be patient it can take a while for you to feel better as most of the meds are slow acting, I now never read the side effects and do not be put off by scare stories as 1 in a hundred means that 99% don't get anything at all only benefits. As I told my son this hurts so bad I'd eat broken glass if it promised to be gone tomorrow. lol Good luck

    PS I had Thyroid failure for 30 years ago, recently diagnosed with Celiac and Pernicious Anaemia and last year had Pulmonary Embolisms and a DVT all found by a great GP and well controlled and I feel great now. RA has meant that no longer jump over stiles whilst rambling but to still get over as RA means mostly some changes but if your lucky they are minor as modern medications work well. Because of the PE and DVT I am unable to take some RA meds but am on Leufoldamide (think thats how its spelt or Arava which sounds much nicer!)

  • Depends on your symptoms and test results how quick you get diagnosed and treatment started. Every hospital has it own protocol on tests and medicine routes. I would take with you a brief medical history, list of tablets currently taking and for what, where it hurts, how long any stiffness lasts in the morning and any questions you would like answered. Try to bullet point on one sheet rather than essay as you need it for a quick reminder. I like to wear short sleeves and trouser that can be pulled up over the knee then generally I don't always have to take too much off. They may also want some Xrays. Unfortunately for your first appointment you may end up with more questions than answers and it does take time to sort out the best treatment plan for you. NRAS and arthritisresearchuk websites contain useful information. Farm

  • Hiya MrsL14, welcome. I think everything I'd have suggested has been covered already, I would agree with stopping any pain relief & anti inflammatory on the lead up to your first appointment. My GP asked me to stop the ones she prescribed me so the examination, testing & imaging were true unmedicated baseline results. It's important for your Rheumy to consider the best meds to start you on, apart from that it can save time as there's no immediate relief from DMARDs, they need a good few weeks to work on the disease.

    This link from the NRAS website may help nras.org.uk/the-patient-jou...

    Do let us know how you get on. :)

  • I think you had splendid advice from many people. NRAS is an excellent source of information. If trawling through their website is too confusing, they are more than willing to help you over the phone. Good luck and keep us posted.

  • Hello and welcome :)

    I think it's hard to predict what your first appointment will be like - there seems to be a lot of variation. Doctors like 'objective' evidence of disease, so if you have clear positive blood test results and/or obvious visible RA-type swelling, your diagnosis could be quite straightforward. If (like me and several others here) your symptoms are less clear-cut, it can take much longer to get a firm diagnosis, and it's even possible that you'll have a few frustrating appointments where you feel like a complete hyperchondriac, before you are finally diagnosed. If this happens to you, the advice and moral support you'll get here is particularly useful. :)

    As a rule of thumb, I'd say the more evidence you can prepare for the rheumy the better. Take copies of your GP test results if poss, although the hospital will probably want to repeat them. You will also prob get X-rays of painful joints - and if they are not offered, it is worth asking for them because they are a useful 'baseline' so you're aware of any changes in future...

    Good luck!

  • Hi, I have recently been diagnosed with RA and my first appointment lasted 40 minutes with the consultant and involved discussing how it all started, where the pain was and then it was down to my underwear for an examination of my hips shoulders etc. I did not expect this but the consultant was lovely and really put me at my ease. i am now on daily medication and methotrexate once a week. It took a couple of weeks for the medication to kick in and i now feel much better than I have felt in months. I hope this helps. If you have any other questions please ask. 😀

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