Confused and need advice information please.

splashley Member Posts: 10
edited 29. Jun 2015, 02:33 in Living with Arthritis archive
Hi everyone.

I was originally diagnosed with seronegative inflammatory arthropathy in my hands and knees by my doctor who sent me to rheumatoid consultant who also agreed on that occasion and a following second visit. The specialist nurse also agreed.

However I have just had a consultant meeting and a specialist nurse appointment. They are both unsure now as on those occasions I didn't have any swollen joints and are still in a lot of pain. I have been taking methotrexate (15mg) and hydrocloriquine, two a day. I have also been taking two paracetamol, 50mg amitripyline, and 4 slow release morphine tablets a day for the pain.

The specialist nurse and consultant said I should not be in that much pain after three months and since there were no sign of swelling that they are now wondering whether I have inflammatory arthritis or fybromyalgia.

I have stiffness in my hands and knees in the morning for two hours. And my hand movements feel sluggish and painful. Doing task such as typing, lifting, brushing my child's hair is difficult and painful. My knees hurt more when I stand. They give way when I walk. Walking is getting slower. They mostly hurt the majority of time.

I thought I had answers but now I feel lost. The consultant has said to higher my methotrexate to 20mg. Then go back and see her in three months when she will decide whether I have it or not and whether to stop methotrexate.

I was wondering how people find there symptoms after taking methotrexate. Did your swelling go down? How about pain levels did they stay the same or reduce? Does taking lots of pain killers interfere with methotrexate and signs of inflammation?

Thank you. Splashley


  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    I can understand your frustration and disappointment. You thought you had a diagnosis and the right medication and that things would therefore start to improve but, following the latest appointment with your consultant, it all seems uncertain again.

    The first thing you should know is that identifying which, of the 200 or so forms of auto-immune arthritis, someone has is by no means easy and can go on for a long time. However, the medication usually remains the same.

    Also, the rheumatologist will not be judging on appearances alone. He ' shew will have your blood test results and that will tell them more than just looking at you.

    Many people do have both an auto-immune arthritis and fibro. I's not uncommon.

    Your consultant has upped the meth which might well solve the problem. Of course the pain will not go away. That's something we learn to live with. It might turn out that you have fibro but not RA. Right now, for the next three months, you have to just live with the uncertainty. It's difficult but necessary. Finding out how meth affects others is probably not helpful as we're all different. I know from reading this forum that some are helped quickly, others not at all and yet others slowly and maybe with the addition of more meds.

    It's a waiting game, I'm afraid, but we'll be here to help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Splashley and welcome to the forum..
    Sorry I wont be much help, but I was diagnosed with OA, around 7 years ago..but have always been convinced there was something else going I am still waiting for them to make up there says one thing and another says something else
    I do hope whatever you have they can get under control for you,this arthritis is far more complex than I ever thought..good luck ..just a point take pics of any swelling..I know its not ideal but it something to show them
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Splashey
    This is just to say welcome to the forums. I have osteoarthritis and various other complaints but not yours.
    Hope to see you around

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    In all my arthritic years the pain has gone in one direction which is stronger. None of the meds I have tried over the years have ever reduced it, despite the medicos telling me it would lessen or disappear altogether thanks to their wonderful concoctions. Fibbers, one and all. I have psoriatic arthritis, which in turn has led to osteo and fibromyalgia, the pain is 24/7 but it became easier to manage once I'd forgotten about being pain-free. I keep the pain 'relief' to the minimum because it serves as a useful feedback, when it's ramping up then it's time for me to stop and rest for a while. The weather influences my beasts, the osteo comes to the fore in the damp and cold, currently it's the PsA which is having a blast thanks to the heat and humidity. Arthritis - the gift which keeps on giving. :lol:

    Diagnosis can be straightforward if one presents with the classic symptoms of a particular type of auto-immune arthritis and the bloods are precisely imperfect. For the many of us who don't obey this 'rule' then it's a far more complicated and long-drawn-out process. Whatever the form of inflammatory arthritis one common treatment is methotrexate, so you are on the right road with that. It is a time of trial-and-error, in that it's all a trial and the errors can mount up - we know how hard it can be, how frustrating and tiring. I empathise. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben