PBC, coeliacs & now RA!

Hi, just been told that I probably have rheumatoid arthritis! Massive unexplained flare up, swollen joints and excruciating pain. Saw my gp 4 weeks ago, he said it was just muscular and to stop googling my symptoms, said I was silly to think it was anything other than muscular...eat your words Mr useless!

Anyway, was given a steroid injection in the bum last night at AAU, nothing has happened yet? Does anyone know how long it takes before the pain relief kicks in and the swelling subsides please?


12 Replies

  • Hi there,

    Sorry to hear you have had a flare up of arthritis, it can be extremely painful, I know. Have you seen a rheumatologist? There are many of us with PBC who have reported episodes of arthritis with seemingly no particular cause. For me I had 2 quite severe episodes a couple of years before diagnosis with PBC, then a couple more less severe and it has now thankfully not bothered me at all for the last 2 years. My GP initially said it was RA, but the rheumatologist said no he thought it was "palindromic arthritis" a sort of episodic condition.

    I was treated with a short course of high dose oral steroids with the severe episodes, this gave me relief in around 24 hours. It did take a week or two for my joints to feel completely back to normal though.

    I hope your pain subsides quickly,


  • Thanks Puddles, I was lucky that it just happened to be a rheumatologist that was on duty for the AAU. It would be a bonus if it turns out to be just a one off flare up, I'm seeing him in a month at his clinic where hopefully answers will be given.

  • Hi Foundry9,

    I have had PBC for at least 9 years now and started with pains and swilling from the RA a year ago. I have not tried the steroid injections so I am afraid I cannot tell you when will the pain will start to go. But as we are in the same boat with PBC and RA, I would like to know how you are progressing and what medication will you be given once you see the rheumatologist.

    I have been on Prednisolone (steroid pills) since July but had to reduce the dosage to 5mgs because it gave me water retention and some kind of cramps which made my ankles worse and after my second visit to the rheumi and while we are still waiting for the Liver doctor to say which medication will my liver tolerate, I am now on hydroxychloroquine since the end of November. The rheumi said that sometimes it takes more than 6 month to take effect. I am just starting to see a little improvement on my ankles.

    I am sorry I haven't answer your question but like I said I would be interested to know how you are getting on.

    Kind regards and I do hope your pain start subsiding soon.

  • Thanks, just to let you know it's now Saturday morning and things are slightly improving. Took pain relief through the night and again thus morning. I'm hoping the steroid inj is finally kicking in? I don't know how much pain or swelling I'm supposed to be left with, if that makes sense, like an acceptable level?

    All I know is ive never felt pain like it, I'll post when I've seen the rheumy again.

  • Took about 3 weeks for my steroid injection to work. I also have pbc and RA. Am on azathioprine for RA which my blood tests show is compatible with my liver.

  • Hi Hulmston,

    Good to hear there are meds we can take for the RA! Are you fully functioning when you take the meds or is there always limitations? I'm curious to see how many folk are left to just put up with it all?


  • Hi foundry9 I am at present fully functional though have only been on the tablets for 4 months. Had weekly blood tests to see if liver was ok. So far so good. Now on monthly blood tests. Liver specialist says he would have put me on same but there was a plan B if they didn't work. Unfortunately I also suffer quite badly with osteoarthritis, needing a knee replacement last year and now finding out I also need my hips doing! So all in all a bit of a wreck but getting on with it. Hope this helps.

  • You sound like your in good hands. Some tough times ahead for you, hope all goes well.

  • Hi there,

    I am 45 and was diagnosed with juvenile RA when I was 6/7 and re-diagnosed again in 2006. I was recently diagnosed with PBC as of June 2014. I have not been tested for coeliacs through my own choice (was given a blood request but chose not to use it) as have responded well with symptoms decreasing significantly since cutting wheat, gluten etc from my diet. Anyhoo, my personal experience with medications for RA is that it can take weeks for any noticeable effect. Admittedly, I've never had a steroid injection in the bum from memory. Depending on the level of inflammation and swelling, my rheumatologist has syringed some of the swelling out of my knees with immediate relief! With regards to the various medications available for RA, it can be a trial and error journey (I was put on multiple meds with only the methotrexate working), but they will have to ensure regular blood tests to keep an eye on your liver function as a lot of these meds can seriously affect the liver.

    As for your GP, I have a new rule of thumb. They know very little of a lot of things (unless you're lucky). You know yourself better than anyone. Trust your instincts. If you feel you're being fobbed off, say so and if you don't get the attention you need, get a second opinion or a third. I had been in remission for a number of years and had assumed I'd "grown out of" the juvenile RA. When I was pregnant in 2005, I started to get symptoms very similar to what I'd experienced when I was younger. I spoke to my GP and was fobbed off. Told it couldn't possibly be. I spent the next 12 months in pain that got worse to the point where I couldn't walk or go to the toilet or even pick up my daughter without the most excrutiating pain that had me reduced to tears every day. I was sent to a myriad of different "specialists" none of who knew what was wrong with me and each of who I'd had to wait 3 months on average to see. Finally I was sent to see an orthopedic surgeon who asked me one question when I walked in to his office before telling me I should be seeing a rheumatologist!!! He asked me to squat as low as I could until it hurt. I laughed and said as I stand is as far as I can squat as I'm already in pain. I went back to my GP and it took breaking down in to tears (something which I am not comfortable doing in front of an audience) and begged for a referral to a rheumatologist. He called and got me an appointment for the next day!!! Why I had had to wait so long I will never know. I've waffled on a bit, so apologies, but it also took the GP and 2 gastros 9 years to diagnose PBC. I now have a new GP and got rid of my gastro and see a wonderful professor at the liver unit who knows what she's talking about. Anyway, I'm incredibly disenchanted by the medical profession. I now go with the attitude that they are idiots and must prove they are worth my time and money.

    If you're able to get in to see a different rheumatologist sooner, then I recommend doing so. I also recommend finding yourself a new GP - maybe ask for referrals from friends etc.

    I hope you get relief soon and have the correct diagnosis and treatment soon ad don't have to suffer unecessarily.

    All the best,


  • Hi H, thank you so much for that info. I agree totally with what your saying about the medical profession!

    I intend to complain for starters (when I'm feeling better) All this could have been avoided with early detection, I can't believe I was fobbed off, didn't think I was that gullible?

    I suppose we put trust and faith in our GP's and hope they get it right. However, no one knows your body like you do, it's time the professionals listened more to how their patients are feeling and go with it.

    I'm seeing another rheumatologist tomorrow, I'll keep you posted.


  • Good luck with rheumatologist tomorrow! I hope it all goes well! Where abouts in the world are you located?



  • Thanks Helen, I hoping for some definate diagnosis tomorrow and something for the bloody excruciating joint pain. I'm in East yorkshire.

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