Inflammatory nodular osteoarthritis

AlliO
AlliO Member Posts: 5
edited 3. Dec 2024, 12:04 in Living with arthritis

hello,

I am new here and would like to know if anyone else has had a diagnosis (or impression as all my letters say)?

I am feeling quite frustrated as there is no information about this on versus arthritis, I am told it is not the same as osteoarthritis and most non rheumatology medics say there is no such thing.

What information I have found says it is usually post menopausal women in there 50s. It usually burns out in 1-3 years and only DIPs and PIPs are affected. I was 43 when it started and 3 years later I am not even perimelnopausesal, and my knuckles, wrists, toes and ankles are also affected.

My symptoms do match the symmetrical and aggressive one of inflammatory osteoarthritis. I started with 4 joints and within a year every joint in both hands had nodules and pain.every time I notice one nodule on one hand there is one on the other hand although they are not the same size.

My knuckles have nodules which is unusual apparently.

thanks



Comments

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,243

    Hi @AlliO Have you managed to find out any further information about this? I've been having a look around and some of the information on inflammatory arthritis might help. However we are no medically trained so hopefully people who have direct experience will respond.

    Best wishes

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  • frogmorton
    frogmorton Member Posts: 30,032

    I do remember these(some of these) threads as i was part of some of them @AlliO

    do any of them feel relevant to you?

    Toni x

  • AlliO
    AlliO Member Posts: 5

    Thanks for replies.

    I have found the other posts interesting as I feel the same as some who say they would rather have something people have heard of and understand like RA. A friend was diagnosed a few months ago with RA and is already said to be in remission and I feel jealous as I am 4 years in and still trying to work out what works and fight for treatment.

    Prednisolone was like a miracle and the before and after photos of my hands are amazing but sadly I am struggling to get off them, on attempt three now.

    I was allergic to hydroxychloroquinie and sulfasalazine was a little bit of help but not much. Methotrexate seems to be ok for my joints but as that says no NIASDs my back is not happy now so they are now investigating if that is related.

    I have lived with back pain for 17 years after having a spinal cord tumour which was successfully removed but left nerve damage causing tingling, numbness and nerve pain. Amitriptyline helps that a a bit and naproxen has been my drug of choice for many years. I have also herniated disc repeatedly with the last time 4 at once this summer leaving me with foot drop and more pain. My rheumatologist has now said I can take naproxen if it gets me off the steroids (even though all the advice and leaflets says no but then I shouldn’t take steroids and anticoagulants and I have done for 2 years due to multiple DVTs incidences). That is helping a bit and right now I don’t care about side effects I just want to sleep without waking up in pain.

    There is so little information on inflammatory osteoarthritis that it is frustrating. People point you to leaflets on OA which don’t fit the symptoms at all and other doctors say there is no such thing as inflammatory OA. Versus arthritis doesn’t list it as a thing either 😞

    What I have found says it is usually post menopausal women but I was 43 and at almost 47 I still have periods and no perimenopause symptoms even (believe me periods on anticoagulants are hideous so I would love to be post menopause). It also says MCJ are not affected but mine very much are as are my toes, ankles, wrists and every joint in both hands. I am so fed up.

    It is comforting to know other have had this diagnosis and found it similarly frustrating and confusing.