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Palindromic arthritis

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Pavoniarem
Pavoniarem

Hi, I have been diagnosed and treated for rheumatoid arthritis for the past 10 years.  I recently but came across a study on Arthritis Research UK on palendromic arthritis that describes my symptoms to a t. I think I have been misdiagnosed, wondered if anyone had any experience of this type of RA?

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  • melanie09308
    melanie09308 Pavoniarem

    Posted

    Hi there. My sister has had palindromic rheumatoid arthritis for nearly 8 years now. Palindromic arthritis can come on overnight, be very painful, inflame your joints etc and then disappear a couple of days later. I have been with her when her hands have swelled within 30 minutes and turned into claws, throbbing with pain and then disappear 24 hours later. Palindromic, from what I have been told, comes and goes with varying degrees of numbers of attacks and longevity but actually doesnt damage the joint/s. Palindromic does eventually turn into full blown rheumatoid arthritis, which my sister and I both have now. I didnt do the palindromic step. It is very difficult to diagnose as blood tests rarely reveal any markers for palindromic. Hope this helps.
  • melanie09308
    melanie09308 Pavoniarem

    Posted

    Hi there. My sister has had palindromic rheumatoid arthritis for nearly 8 years now. Palindromic arthritis can come on overnight, be very painful, inflame your joints etc and then disappear a couple of days later. I have been with her when her hands have swelled within 30 minutes and turned into claws, throbbing with pain and then disappear 24 hours later. Palindromic, from what I have been told, comes and goes with varying degrees of numbers of attacks and longevity but actually doesnt damage the joint/s. Palindromic does eventually turn into full blown rheumatoid arthritis, which my sister and I both have now. I didnt do the palindromic step. It is very difficult to diagnose as blood tests rarely reveal any markers for palindromic. Hope this helps.
  • melanie09308
    melanie09308 Pavoniarem

    Posted

    I forgot to say that we are both on the same treatment - hydroxychloroquine and naproxyn which has turned our lives around. She is 58 and I am 51. She may be starting on methotrexate soon but she is nervous of symptoms of nausea which she has a particular phobia about.
    • Light
      Light melanie09308

      Posted

      Melanie, has your sister actually already had the nausea or is she just reacting to what's she read about MTX?

      Asking because in 8 years I've never had nausea with MTX, so it does'lt necessarily follow.

    • Pavoniarem
      Pavoniarem melanie09308

      Posted

      Hi Thanks for your reply.  I have been treated with methotrexate for the past 10 year.  I didn’t tolerate it well in the tablet form which I was on for about 5 years. I would feel nauseous for about 3 days in each week and I was on a relatively low dose (15mg).  The dose was dropped to 10mg and I was switched to weekly injections (which I do myself) and I have no problem with it now.  I have to say though that it was the hydrochoxychlorine that sorted out those painful flares that would jump from joint to joint.  When I read up on Palindromic Rheumatoid Arthritis which I hadn’t really heard about before, It was like reading an extract from my diary.  Did you sister get an early diagnosis?  I can’t understand why I am not classed as having PRA? The treatments are similar for both RA and PRA and you might think why bother, but when it comes to research etc., the stats that they gather from RA departments in the UK will not be accurate and I think that is important.  Also, can I ask, did your sister have problems with her neck?
    • melanie09308
      melanie09308 Light

      Posted

      Hi, shes not actually started on it yet....reckons she may do in a couple of months. She has researched it and identified that if she is able to inject herself rather than take the oral MTX then the likelihood of nausea will be significantly reduced. Her doctor has agreed to assist her in doing this IF she doesnt get on very well with the oral MTX. I think the fact that her neighbour is on MTX and her neighbours brother and another close friend and they all suffer with the nausea bouts. Their doctors havent told them that they can do the injections.....I am presuming because that will cost a lot more?
    • Light
      Light melanie09308

      Posted

      Don't think injections cost much more. I used them for a year, sef-injecting with a fine diabetic needle (which I recommend).

      Then I went back to oral and have been perefectly fine on oral for 4 years.

    • Pavoniarem
      Pavoniarem melanie09308

      Posted

      It will cost more but it does stop the nausea.  When I first started injections it was a bit daunting as I had to put it together myself, insert needle then plunge.  Now I have a Metopen which is really easy to use.  You hold it against your thigh/stomach and gently press down which releases the needle.  You then press a button and wait 5 seconds.  No pain at all. 

       

  • joan69322
    joan69322 Pavoniarem

    Posted

    I was diagnosed with palindromic arthritis years ago and pain mostly in large joints was awful. Now I have RA which pops up in different places, mostly hands and feet, in varying degrees of pain. I have a cold at present and rather strangely no real pain in joints! My immune system must have other work to do?
    • Pavoniarem
      Pavoniarem joan69322

      Posted

      Do you mind me asking what medication helped with the Palindromic arthritis? Did you/do you ever get problems with your neck?  My RA consultant insits that RA does not affect the neck and yet I have been in tremendous discomfort this past year with neck stiffness/pain?
    • melanie09308
      melanie09308 Pavoniarem

      Posted

      She was put onto Hydroxychloroquine for her Palindromic once she was diagnosed. It took 18 months for them to diagnose it though. The doctor kept telling her to take Ibuprofen but, of course, that wouldnt touch it. She was given Naproxen to reduce the swelling but she would really need to take that in the run up to an attack and she never knew when was coming on. I think the neck area was sore for a while but then when you have RA, it feels like your whole body is sore at times!! If you read up on women going through the menopause and related aches and pains with joints it always identifies the neck, shoulders hands and feet as being the most problematic areas.

      I had particular problems with my neck when this all started for me but the neck seems to have sorted itself out since I've been on hydroxychloroquine, thank god!

      I was dumped into having RA within 24 hours, so very different to my sister. I had an operation to remove a tumour on my left adrenal gland. The gland had to be removed too which ended up with my cortisol levels being too high and then overnight being too low. Apparently my body went into shock and hit me with RA which I am now stuck with! I am also on steroids in order to raise my cortisol levels to keep my body working and keeping fingers crossed that the remaining adrenal gland kicks in one day and starts to work as it had shut down. Amazing what the body does to itself isnt it.....particularly when you least expect it. I was in awful pain but once they started treating me for RA, my life turned around. I still hurt in the mornings, particularly hands, feet and elbows! but once I get moving I'm not so bad. Its sitting still that doesnt help for me so I'm on the move all the time! I presume that other people with RA are similar. Before medication I went from being a 51 year old busy lady to overnight a 81 year old, hardly able to move! Thank god for meds!

    • Pavoniarem
      Pavoniarem melanie09308

      Posted

      Absolutely!  Its a horrible disease.  I am going through the menopause so your comments on related aches is interesting. 
  • joan69322
    joan69322 Pavoniarem

    Posted

    I was treated with steroid injections for a year or so at (I think) 3 monthly intervals.  My doctor at the time first called my problem "spasm".  It was back in the mid 90s so my memory isn't good.  The pain would appear overnight and in one joint at a time causing me such pain I could not bear to move the joint the tiniest bit.  This would last for 3 or 4 days then go just as suddenly.  I would have several weeks with no problem though.   Seemed to sort itself out but left me with RA which is gradually becoming more of a problem in my daily life.
    • melanie09308
      melanie09308 joan69322

      Posted

      Hi Joan . Sounds like classic palindromic RA to me. Speed of identifying it appears to be whether you are with a good RA consultant. 

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