1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

It's rheumatoid arthritis

Posted , 9 users are following.

amkoffee
amkoffee

I don't know how many of you will remember me having been on here many times with questions and concerns and problems tons of problems. Well I had an MRI done yesterday on my right hand. My rheumatologist requested that because it was hurting the most of my two hands. I have been experiencing horrible joint pain the last couple of weeks. And I suspected that it could be from Sjogren's syndrome but I can't get in to have a lip biopsy done for a couple of weeks. Anyway my rheumatologist just called me to tell me that the MRI showed rheumatoid arthritis or actually they called it inflammatory arthritis on the report she's the one who said rheumatoid arthritis. She even said I might be able to get off the prednisone. I think she's thinking I don't have PMR but instead I have rheumatoid arthritis. Personally I think I still have PMR in addition but I'll just have to wait and see. I'm going to see her in the office on Tuesday next week where she has to do some kind of testing and reporting. I know she mentioned testing for lupus. And this is to get Medicare to pay for my medication for the rheumatoid arthritis. It's basically a bunch of hoops she and I have to jump through so that I can get the proper treatment covered by insurance.

1 like, 30 replies

30 Replies

Prev
  • margaret89358
    margaret89358 amkoffee

    Posted

    Hi Amkoffe, it will be good if you get the right diagnoses. My brother was diagnosed with RA when he was 17 he is now 65 and has a very fulfilling life 4 Girls not in a wheelchair which he was  told if he got to 40. He has had artificial joints, balls of his feet done, toes straightened I could go on. The only part that has not been affected is his hands they are still straight the doctors were baffled. When I first went to the Rhmy he did blood test MRI thinking I may have it as it can follow in family’s. One of my mothers @unties

    mothers aunties was in a wheelchair mother

    mothers aunties had RA and was in a wheelchair by the time she was 30. My brother has been taking steroids for as long as I can remember, plus aspirin and a 

    cocktails of drugs he feels it is a small price to pay to still be able to drive and enjoy his 4 daughters and grandchildren. I know it is not always a comfort to know when we get diagnosed with a horrible disease, illness we know that this forum is a fantastic place to get so much information and know that we are not alone.So many are so knowledgable. Keep positive and strong as you know we are not alone.

     

    • amkoffee
      amkoffee margaret89358

      Posted

      Thank you for responding Margaret. My pain started in my hands. And it is just increasingly got worse particularly in my right hand. And it is hard to have it in your hands because you do everything with your hands. For years my left knee has bothered me off and on with osteoarthritis (never confirmed) and I just get injections and everything's good for a long time. But then I started getting arthritis in a few other places like my right foot and in my neck. But everybody said it was osteoarthritis. And I even got tested for RA and it was negative that was about 9 months ago or more. I don't want my hands to get all gnarly. And damn they really hurt. I've been wearing thumb guards on them for several months and I wear these bands on just below my elbows to help with my elbow pain which was said to be tendonitis. In the meantime my rheumatologist wants to come up with a biologic that is not hard on my liver the way Methotrexate is. I've had some high enzyme test with my liver. And I had to get off anything and everything that could affect my liver. Once I did my liver test went down to normal. And we don't want to affect that again.

    • EileenH
      EileenH amkoffee

      Posted

      But being "negative" for RA isn't conclusive - you can be seronegative. And there are other forms of inflammatory arthritis.

    • amkoffee
      amkoffee EileenH

      Posted

      That's what I've heard. That's why she went ahead and treated me with the RA medicine Plaquenil. And I took it for about 4 months and I didn't get any relief from it but at the time I wasn't having the joint pain except in my thumbs and hands but my other joints were fine. When I got off of it is when I started having the pain in my joints. So I just started it again right after my MRI which is what my doctor and I had decided to do. I just wanted to make sure the MRI reflected what was truly going on in my body so I held out on the Plaquenil until after the MRI.

      Are you the Eileen that is on another site that has a PMR category? I'm trying not to say the name of this site so that this doesn't get moderated.

    • amkoffee
      amkoffee EileenH

      Posted

      I don't know where I'm going or where I am Eileen. I am on patience.com. So my question actually is are you the same Eileen that gives advice on the PMR group?

    • EileenH
      EileenH amkoffee

      Posted

      I wonder if you DID get relief from the Plaquenil - just it stopped things happening which then turne d up when you stopped taking it. But Plaquenil isn't used a great deal as the first line for RA.

      I'm on HealthUnlocked - but not as Eileen. Also on the NE of England forum, my user name isn't Eileen but we are all on Christian name terms there.

    • amkoffee
      amkoffee EileenH

      Posted

      Well that's exactly what I thought about the Plaquenil and my rheumatologist agreed. I've been taking it now since Friday I think. Friday is when I had my MRI and I think I started my first pill after my MRI so it certainly hasn't been long enough to see if it works. And I'm going to see my rheumatologist on Tuesday so even by then it will not have been long enough. In her email to me she listed several drugs one of them was methotrexate. But I can't take Methotrexate and she knows that. She put me on methotrexate when I first started tapering my prednisone and was having problems tapering. But because she put me on it she started checking my liver enzymes. And they were going up up up and away. So after a few months she took me off of it and I went and saw my pain management doctor and told her and she took me off everything that could hurt my liver. So now I only take oxycodone not oxycodone/acetaphetamine mix. And my rheumatologist said that she was going to think about it over the weekend and figure out what biologic would work best for me with all my conditions. I also can't take Ibuprofen even if I was not on prednisone it has never agreed with me.

      About whether it was you or not on the other site I wondered because of the H after your name on here.

    • EileenH
      EileenH amkoffee

      Posted

      That was just to differentiate me from other Eileens when I registered. It was my first experience of online signing up and I just couldn't think of an appropriate user name. I have improved a bit - not a lot!!!!

    • EileenH
      EileenH amkoffee

      Posted

      Sorry amkoffee - totally confused now. We are on patient.info here. the link you've given doesn't exist.

    • amkoffee
      amkoffee EileenH

      Posted

      I realized that after I posted the comment. All this pain is going to my brain and I'm not thinking clearly. I dictate into my phone and apparently it put in the wrong word and I didn't notice it when I proof read it. Not even sure if I proof read that comment before I press send. So just ignore me on that issue. LOL

    • EileenH
      EileenH amkoffee

      Posted

      No problem!!!!! Pred plus pain = not a good place...
  • mimi1950
    mimi1950 amkoffee

    Posted

    So sorry to.hear you are in so much pain.I have just read this whole thread, it's 4:30 am, I've been awake for more than an hour..can't get back to sleep due to pain in my hands, elbows, legs, feet, hips ..I had been thinking that this pain was due to DOMS but after reading about your experience and PMRpro's explanation, I'm thinking it's RA or some other condition besides or instead of PMR...I tried upping the pred and got no relief, and the pain is very different from before the PMR diagnosis. My shoulders get painful still from holding up my phone and texting , but now it's also the pain in my fingers .

    I'm wondering about the medication..isn't RA treated with steroids, too? Doesnt the pred protect the joints from inflammation, too?

    I hope you get some answers soon, thank you for sharing , I'm learning from this.

    • EileenH
      EileenH mimi1950

      Posted

      The inflammation from flares in RA are brought down using pred quite often but no, steroids don't protect the joints from ongoing damage. That is the DMARDs - disease modifying anti-rheumatic drugs, but they don't really know how they work, just that they do. And now the biologics which hopefully actually work on the mechanism of the disease itself. But there are a lot of different versions so you still have to find the right one for a particular patient, DMARDs of biologics.

      If the pain is different - it possibly isn't PMR. You can have both, some doctors think PMR can morph into RA, I don't think it morphs, I think it is just the immune systems developing another fault which is different (in my mind it is at least!)

    • EileenH
      EileenH

      Posted

      And just a thought - have you been investigated for a spondyloarthropathy? Ankylosing spondylitis typically causes night time pain, earlier than PMR pain tends to be, and can affect all over, not just the spine.
    • amkoffee
      amkoffee EileenH

      Posted

      No I haven't but I will certainly discuss that with my rheumatologist. I know you've mentioned this particular condition on threads before. And I looked it up and didn't think it fit me at the time but I need to look it up again and see if it does now with the new added symptoms that I have. Thank you for the suggestion Eileen

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.