Bad news today

I saw my amazing Rheumy yoday and to think I wasn't that keen on him before.

He says he has studied my notes for the last five weeks and he thinks I may have a rare auto immune disease with or without RA.

I pretty much cried through the rest of the appointment but I know he said three very long and technical words I haven't heard.

I am having ultrasounds, X-rays, hand op to free the ligaments and remove all the lumps for biopsy.

I have to stop my RA meds for just now to see if it helps with further diagnosis. But he will give me steroids when I need as this helps the disease he is thinking off.

Then he said but it may not be, he needs me go have these test done . I am gutted and don't know where to turn .

I am desperately trying through the tears to see a positive as I haven't responded to the biologicals well and he said one other patient had this and he started another treatment with the RA treatment and is doing well , so I just have to hope ....

Feeling miserable ... Wish the helplines were open late lol x A

23 Replies

  • Hi there sorry to hear your news. Keep your hopes up. What did he think it was? Are you negative or positive??


  • Oh my gosh, Allanah, sending you hugs. It is horrible having to have lots of tests and an op. It's really hard dealing with uncertainty but if you do have it, then as you say his other patient with it is responding well to the treatments & that's something positive to hold on to. Thinking of you and take care xx

  • I know the waiting is difficult, try to keep a open mind. He did say he wasn't positive of the diagnosis.

    I spoke with my rheumy nurse, she said one of their patients (RA neg)had gone into remission for 18months with Ritubimab infusion, they didn't expect it to work but it did.

    So don't lose hope.

    Love Carole

  • Oh, Allanah, what a tough appointment. How these things do come out of the blue :-( It sounds like he is being very proactive about treating you for this new whatever it is. You're right, Friday night is a bad time to need to talk things over because it seems like everyone is closed or out. Have you got an idea of what he thinks it is? Will you Google or will that be even scarier? (I can still remember the first time I looked up RA, and thinking "****! I don't want to have that!" Seems I wasn't offered a choice.)

    Keep chatting on here, because there will be folks about, even if we aren't experts we care.

    Take care and be kind to yourself over the weekend.

    Dotty xxxx

  • He said it was something I can't even remember the words but the biopsies would be the proof but it may still be a mix of RA and the other immune disease. I am sero negative Carole but I was told I have very other symptom of RA , terrified now.

  • It's one thing after another for poor you. But I know you are a very strong lady and will battle through. My thoughts are with

  • Oh Allananh and you were so funny this evening...bless you he sounded like a good person and although I've never met you I think you are a very positive person. Keep talking to us we can help hold your hand..PM me if you wish.. Sending you a smile. Maryx

  • Yes sorry Mary, when the " police took me" it's was cause I started to get upset, I joined in to take my mind of it but then I got worse.

  • That's completely understandablexxxxxxxxx

  • AT least you know he is working on your case Allanah,which is a good thing because then when finds out what is actually wrong you,i know you can't remember what he said,but if he thinks he will have the answer for you.Go onto the RA pages and see if you can spot what he said,it will give you something to do instead of worrying about it,also you can ring his phone number at the hospital and ask for what he said. Take care love me .xxx

  • Keep your chin up, Allanah,. As Sylvi said, at least he is taking you seriously now and who knows, maybe whatever it is can be treated far better than RA and we will all be so jealous of you! Don't give up hope. It sounds like he is interested in your case and I sometimes think that's half the battle. Clemmie

  • Oh my dear friend,

    What a wonderful woman you are. You were such a joy on the site last night and didn't give an inkling of what you were going through.

    Keep talking to us Allanah. As Scouser says, we are here for you.

    Take care


  • Hi allanah just to say thinking of is a struggle at times and also very worrying...but you seem to be a very positive person...keep your chin up and hopefully when more tests are done you are given the right medication to help you...sending you lots of hugs take care Nicola x

  • Hello pet

    All I can say is good luck with all the tests, we all with RA realise that our immune systems can take a rattling so it is spot on that your Specialist has picked up the problems that you are suffering from.

    So good luck, you have many friends here that will stand in your corner

    Keep a hold


  • O Allanah sorry to hear your news. Keep positive & good luck with all the tests etc. Irene x

  • I'm so sorry to see this darlin, what a horrible scary and confusing time for you. Xxx

  • Ah Allanah, I hate thinking of you crying..You were your usual clever self at the pier for awhile, that is brave of you. Do you think he might have said "Polymyalgia Rheumatics? There are many symptoms similar to RA, the biopsy will differentiate it. If that is what he said, of course. I've always thought I didn't care what he wanted to call what I had going on, just fix it!! When it turned out I had both PsA and RA, things began to make more sense and treating them both proved to be workable. Not much difference in treatment I guess, maybe dosages differ. Anyways, dear friend, don't worry, sounds like you are in the best of hands, and that is a big POSITIVE! Will chat later. xx

  • Xxxxxxxxccx

  • Hang in there......bless you......x

  • OMG Allanah, I so feel for you going through this. Holding your hand in a cyber sort of way and praying like mad for you. God bless. Kath xxx

  • Xxxxxxx

  • Hi Allanah

    So nice to see the lovely messages of support and positive comments you've had on this post. Hard to take something like that in during a consultation, but in future appointments perhaps if they mention complicated names of conditions, tests, medications etc you ask them to write this down for you, so that you don't have to worry about trying to remember them. If you'd feel better knowing what it was he mentioned, it might be worth calling the rheumatology team to see if you can find out.

    As Sylvi and others have said, it is good that the consultant is looking into things, but all this must have come as a real shock! You are of course welcome to call the helpline to discuss if it would help.

    Kind regards


    (NRAS Helpline)

  • Thanks, he was to call me today but didn't. Do maybe I will get a letter. As an ex nurse I generally understand the lingo but these words not a clue! But will know more after the biopsy I presume xx

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