Different week, different specialist and RA diagnosis

Morning. I posted just over a week ago after a fibromyalgia diagnosis despite positive RF and Anti-CCP tests (but ESR inflammation markers not raised). Your replies gave me confidence in seeking second opinion - thank you so much.

I have since been diagnosed with RA by a different consultant. Totally different experience - diagnosis made after about 10 mins - just listened and squeezed (painfully!) and the positive Anti-CCP results. I questioned it following the previous opinion of fibromyalgia but he seems in absolutely no doubt and started me that day on a 6 week steroid course which so far has been amazing for the pain, although I'm getting lot of reflux despite taking omeprazole - not complaining as I'll take reflux over pain any day! I think he said I would also go on methotrexate after seeing the specialist nurse so that I would be on steroids and metho concurrently until steroids taper out in 6 weeks time. Does this make sense or could I have misunderstood? It's just I've received my nurse's apt and it isn't until end of June.. Perhaps I should call them tomorrow to ask - I think maybe you can't start on that drug til you've seen the specialist nurse and they've seen the chest x-ray that was done last week.

Part of me worries about taking these drugs when just a week previously another specialist (though it seems she was a specialist registrar and had not qualified as a consultant) was pretty much ruling RA out and advising against any drugs - just mindfulness etc...but there's a bigger part of me that is just so relieved to feel half myself again - and scared of feeling how I felt before...


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14 Replies

  • Amazing to get a second opinion so quickly - well done!

    And although sorry you've joined the club, at least this is a step to getting back to normal. Very common to start on steroids and taper off slowly while the longer term drugs take effect. But as you say, June is a bit far away. Maybe talk to your GP about extending a low dose of steroids until then? I have a love:hate relationship with steroids - yes they make you feel like superwoman, but the tablets also turn me into an emotional wreck.

    Methotrexate gave me my life back, and has been great for me. For most it's a good drug.

  • Morning, and thank you for the reply.

    Agreed, very lucky re the second appointment - long story - more difficult to get apt with my GP in fact. The first one I can get with her is last week in May. Good idea re the low dose esp if reflux wanes once my body's used to the steroids. Only on day 4 of them and the relief to be relatively pain-free and able to keep my eyes open is worth any drawbacks at the minute.

    Great to hear your positive comment re methotrexate - I'm decided to embrace whatever the rheumatologist suggests drug-wise and hoping my body does the same. :) By the way, trying to learn as much as I can and this morning I'd been reading through another long thread many years ago where you'd responded and I got a lot of info from that reply too. Can't under-estimate how much help it is at start when so many questions. Thank you very much.

  • Sorry you've joined the club. I posted in here when I was first diagnosed and got loads of positive responses. Worth checking those threads too.

    I've been on MTX since diagnosis in Dec 2014 (my ex-GP diagnosed fibromyalgia too 🙄) then I saw a Rheumy privately who diagnosed RA there and then.

    MTX (with other DMARDS) has been brill and I've now run 2 Half Marathons. One in Oct raused £1400 for NRAS, the last one was a few weeks back and I'm running again for NRAS in Oct.

    You except new norms in life and he one so grateful for your health.

    Try to stay positive (it's tough) and trust your instinct that your Rheumy wants to help you.

    Let us know 😊

  • Thanks for this lovely message and encouragement and sorry delayed reply. I'd always considered myself a pretty positive person by nature but boy this is challenging at times, so it's inspiring to read about your mtx experience and running.

    I'm going to the London Marathon tomorrow with work. I work for a charity and we have some people running for us so going to cheer them on. Already fretting about whether my feet will let me down in the morning - as fair bit of walking to do - and no one at work yet knowing about these problems.

    Seeing the runners will inspire me too and looking forward to one day getting back to fitness again. Well done for your NRAS fundraising and best of luck in October with the run. xx

  • I hope you get your situation sorted out soon. It is not always easy to diagnose RA, especially in the beginning. I can well understand your first consultants reluctance in making a deffinate diagnoses since you showed no inflammation. Elevated CCP and possitive RF can also be seen as a high probability of RA in the future. Your hypothyroidism is also a player in your situation. I hope your thyroid function was also thoroughly examined before RA diagnosis. Joint pain and symptoms are often seen in patients with thyroid dysfunction.

  • Morning Simba, and thanks for this. Yes, I can understand, and not a diagnosis to be made lightly either. The first lady however didn't really sit on the fence as such re the RA - she pretty much ruled it out - said she could tell if someone had RA by the time they sat in the chair. Hmmm. I flinched a little when she went to squeeze my hand and she clearly felt it was an out of proportion reaction as it wasn't swollen. She told me that it looked like I'd had a palindromic arthritic episode that had triggered a change in how my body processed pain so - and I'm paraphrasing here because she put it much more sensitively than this - I'd become a woose overnight. She did however say she'd request an ultrasound so at least was giving some credence to my worries.

    My thyroid function hasn't been examined thoroughly I'm afraid. I've pedalled that idea to doctors and took print outs of research that indicated problems if T4 wasn't converted to T3 but the GP dismissed it out of hand. My TSH is in the normal scale and even though I felt it was hugely co-incidental that my first flare occurred about 3 weeks after the meds were lowered both GPs I spoke to dismissed it and I haven't pushed for an appointment to an endo as I don't think they'd refer when levels TSH levels are currently 'normal'. It's complicated isn't it. Thank again for your reply. :)

  • Oh yes it is complicated 😓Understanding thyroid function and the connection of hypothyroidism and arthritis is an expertise on its own. It is not uncommon that RA breaks out after long wrong treated hypothyroidism. I don't want to bud in but would in your situation go and have a thorough thyroid pannel done. The normal TSH is not telling you the whole picture as you know. Good luck! xx Simba

  • Hey there, hoping you're OK. Just to say thanks for the above. I've had bloods done this week for the thyroid and have requested the full panel...mightn't mean much to me but might join the thyroid forum here and ask in any case. Hope you're having a good weekend.

  • Good idea to do the panel 👍🏻Do let me know the results, am very interested. Have been reading a lot about the thyroid RA connection lately😊 I think it's really a good idea to join the forum, I already have. Very active and lots and lots of information👍🏻😊 Good luck. Simba

  • If you can't get an emergency appoinment with your GP, try calling your Rheumy nurses...they will be able to tell you the best way to deal with not getting too dependant on the steroids if they can't fit you in sooner. ,......Prednisololone draws you in & gets rid of the pain, but you will read here of the devastating side effects it can have....not to mention weight gain!

    Methotrexate (without steroids) was a magic bullet for me & lots here on this site. It can take 3/4 months to kick in, but do try not to ask to try another Dmard too soon, unless of course it really does not agree with you.

    A lot of success on meds for RA starts with grin & bear it I'm afraid.

    Your experience is a great example of being pro-active & taking charge of your own destiny...not just believing your first diagnosis when it doesn't ring true. 18 years ago I was told " you must expect a few aches & pains at your age" & told to take an Aspirin! Like you I hot footed it .....in my case to a Rheumatology Professor recommended by a medic friend, & I'm still here to tell the tale without experiencing some of the terrible experiences I have read about here, because early diagnosis was delayed.

    Hope you get things sorted tomorrow & Good Luck on Methotrexate...I had 7 great years on it & felt 99% normal with no other meds( except Folic acid 6 days a week) during that time!


  • Morning AC and thank you so much for the reply and kind words. I've been waiting until I'm in a more positive frame of mind to reply - been all over the place last couple of days, thinking it's the steroids and lack of sleep but not feeling myself and jumping all over the place workwise. Starting to get more pain again in hands and left foot and think it's because I'm back at work so using computer much more, and wore a pair of normal shoes yesterday instead of the trainers I can only seem to wear comfortably now. Little to complain about I know, but makes me more eager to get off the steroids and on to the methotrexate - though not knocking the pain relief and may well end up whinging about their side-effects too! Called the nurse for an earlier appointment, thanks for that, and she's added me to the list in case of cancellations.

    Interesting to read your experience on initial diagnosis. Treatments seem to have progressed a lot in last 20 years and thank goodness you managed to find someone who knew their stuff. My birth mother (I am adopted) has severe RA, and wasn't quite so proactive so I feel compelled to do everything I can to prevent my own joints going the same way. Albeit I'm still learning how to strike a balance between letting it consume me and getting on with 'normality'!

  • If you haven't already had one try asking for something like a Depomedrone injection. It's a different type of steroid fromPrednsiolone & if you are lucky can give you up to three months relief.

    I am lucky & it suits me & I found once I got that relief I stopped tensing with the pain.....so I could relax & wasn't overwhelmed with dread all the time. That might sound a bit " drama queen" but I found when the pain.....mainly in shoulder/arm/wrist was really bad I couldn't be rational as I could hardly move. Very thankfully I wasn't working at that time, but I can imagine how trying to cope can only make things extra difficult.

    So hang on in there.....I really hope you get some relief very soon.....& buy yourself some trendy trainers they are "IN" this Summer.....so they tell me!

  • Morning :) And thank you. Always happy to shop...

    Thanks so much for your advice. Managed to get speaking with a rheumatology nurse and with her agreement have reduced the steroid dose a little. She suggested supplementing with naproxen from GP so I've been on the case with that. Dreadful reflux and still not sleeping so not sure how the steroid will pan longer term (never mind the increased love handles!) but guess it's a bit trial and error.

    Good to know about that injection so keeping that up my sleeve in case I really can't get on with the prednisolone until I start on the mtx.

    Hope you're having a good weekend.

  • It's a slow old process getting settled on a drug regime after initial diagnosis.

    I find keeping in close touch with the Rheumy nurses is vital...they seem to live in the real world...not the rarified atmosphere a lot of rheumies inhabit!

    Ask your nurse what you can take for the reflux from Naproxen....I have solved that problem , but you need to ask someone who knows how all your meds react together to suggest a remedy.

    Now go look at trendy trainers...I saw some lovely gold ones from Skechers on QVC the other day. On that Chanel you can buy them to try for 30 days & get a full refund (less p&p) if they don't suit you....very useful if you have trouble finding comfortable footwear.

    I know they honour the refund claim because I bought some expensive shampoo which didn't suit me & when I returned it the refund was in my account in days.

    Don't give up....it will all come good soon.

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