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Confused about diagnosis?

Posted , 10 users are following.

themorninggirl
themorninggirl

Hi,

I had my first appointment with rheumatology nurse specialist today after seeing a consultant a few months ago on a referral from my gp.

I have been put on hydroxychloroquine, just 200mg once a day, she said just starting with a mild medication as at the moment it's relatively mild.

I'm just a bit confused as she said I have pallindromic rheumatoid arthritis, but when I've looked up there is pallindromic rheumatism, and rheumatoid arthritis? The first, PR, says that it comes and goes but doesn't leave damage, but can lead to RA. However, she also said I have damage + thickening in my wrists (my ultrasound + xrays have shown this up), so I'm confused as to which diagnosis I have been given? Especially as tbh it doesn't really come and go that much, it does move between joints though but it's pretty constant that my wrists and fingers ache even if just on a low level when I'm having a good day, and my neck also aches pretty consistently these days to the extent I'm having to take painkillers regularly. When it's really bad I literally can't get out of bed without screaming. So I'm unsure whether she means it's pallindromic because it moves about, but is actual RA, or whether they are saying I just have it but not really leaving damage, although they are saying it has? She also said that all the symptoms I have (fatigue, hair loss, anaemia) etc are part of the condition, and that if I get any hot or swollen joints I have to ring them as may need steroid injection (I have only had these a couple of times on fingers but have gone down within a day). 

 

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  • Rowbirdie
    Rowbirdie themorninggirl

    Posted

    I m confused too! Joint damage is one of the deciders for RA. I understood palindromic rheumatism completely goes sometimes.

    with RA it can move round the body and affect different areas. My original diagnosis was  psoriatic arthritis as I had tremendous pain in 1 shoulder, 1 knee1 thumb ( not symmetrical) but it soon affected the matching joints and there was evidence of joint damage in my feet( had just thought that was standing too much in my job)

    can you contact rheumy nurse with updated symptoms esp if you are taking so much painkillers. Because IF it is RA the UK NICE regulations say early diagnosis plus aggressive treatment early on is best approach to delay development of RA. Hydroxychloroquine is a mild dmard . I was started with methotrexate- dose increased twice, then 2 others added. As was still in lot of pain and stiffness after 6 months of 2 DMARDS was put on biologic which has transformed my life.

    i agree with you it's vital to be proactive with this. To have a diagnosis of palindromic rh you must have had periods of time with no symptoms. Is that correct? Or are they being ultra cautious and really should be considering a different diagnosis and more aggressive treatment. Only they can really answer that, so go back to them with your concerns. Be very honest about the pain. Never accept steroid jab as a treatment only a symptom reliever while waiting for another med to work. the key question you so right,y point out is ' if I have joint damage, doesn't that mean RA' ? If they say yes you need stronger dmard than hydroxy.

    all the best

  • tony35673
    tony35673 themorninggirl

    Posted

    I'm glad out health system isn't the same as yours.   I at least get to see a Doctor for my RA/PsA.   Couldn't imagine anything worse than consulting a nurse about anything more serious that a pimple, I'd have second thoughts about that as well.

    • themorninggirl
      themorninggirl tony35673

      Posted

      I couldn't afford your health system so I'd probably end up seeing nobody wink I do still see a consultant and my care is consultant-led so they have made the decision about the treatment, the specialist nurse led clinics are to enable more frequent appointments which wouldn't happen with a consultant as not enough to g oaround everybody, unless I paid an extortionate amount for private. I would generally prefer all ill people get treated than just those who could afford it.

      The clinic is lead by nurses with a specialism in RA, they are probably more knowledgable about it than a general doctor would be tbh.

    • tony35673
      tony35673 themorninggirl

      Posted

      Our public medical system is funded by the tax we pay, so whilst we do pay, it's via taxes everyone worker pays.   It costs big to see a private Doctor or specialist, but a large portion of that is paid by insurance.   Private health insurance is getting beyond affordable here now so many don't have private health insurance and use the public system..   Defence covers any medical ervices I need so I go private.   Unfortunately, all the guns in the medical world here work for the public system.

    • lyn1951
      lyn1951 tony35673

      Posted

      Tony - but for nurses I believe my husband would be dead of heart failure. Husband in ICU at local hospital, Dr at our hospital declared there was nothing wrong with him, he had had congestive heart failure 18 hours before, how did he come to that conculsion his ankles were not swollen, only examination he did.  I was in the room when he ordered my husband be discharged and the nurses argued with Dr within my hearing, he overruled the nurses and walked out.  At that point I questioned the nurses who he was, did not introduce himself, they explained he was the heart Dr, I questioned them further, and they siggested I take my husband to the specialist heart hospital across the other side of the city, which I did, they kept him 8 days and stablised him with medication.  Even the specialist heart hospital could not understand, I had a big arguement with them about local hospital, and discharge, they did not believe me, and questioned my story about being discharged. In the end even the herat hospital discharged him telling me there was no more they could do. that was nearly 7 years ago.  I some time later said to my sister who is a very senior nurse, why did I know my husband was so sick with heart issue, she laughed and said you lived with it since you were a child, out father had heart failure his entire life, she commented that both of us could recognise heart failure at 50 paces, and like she said I might be able to do something about it, but you without training can only suggest to someone to see their Dr.
  • carole78111
    carole78111 themorninggirl

    Posted

    Hi there I am sorry you are confused about your diagnosis, I suspect you are one of millions! I have posted a few times on this site as I have had ra for 32 years. Thought I knew everything there was to know about this condition. I DIDNOT know it could cause anaemia, but have found out in last few days as I have been so weak and exhausted with very low bloood pressure and racing heart, I felt I was dying. Am awaiting blood test results which if it comes back that I am. anaemic will also explain why for the last 5 years minimum I have had terrible leg cramps for at least 5 days of each week and for up to 3 times a night. Also have involuntary twitching muscles continuously in my right leg. My gp told me I was just one of the unlucky ones, and treated me with quinine. I even filmed it to show my consultant who thought it was quite amusing. Have always told my family not to seek help from Doctor Google, but you know what , at least you get possible answers instead of being fobbed off with nasty drugs that sometimes do more harm than good. Still bedridden, still feel dreadful 
    • mike42824
      mike42824 carole78111

      Posted

      Hi Carole, I too get the most agonising cramps in my left leg also mainly at night! I have to stretch my leg out and watch the muscle twitching for a good minute or so before it "calms down" sufficiently for me to get back into bed. My GP put me on some Quinine tablets that stopped the problem for a while but then it flared up again. It seems to be quite common among RA sufferers so i'm led to believe.

    • carole78111
      carole78111 mike42824

      Posted

      Check out motor neuropathy mike I discovered it after reading a post on this site last week. I seem to have all the symptoms but have made an appointment with gp a month ago !! And will be getting it sorted once and for all. As for cramps being common in ra, no one has told me that before. I believe these heavy meds (I have been on embroil about 10 years ) was one of the first people in this area to trial it. ) do a lot to your body by stripping vital vitamins and minerals, leaving you at risk of all sorts of conditions. IEmbrol changed my life and am grateful for the relief it has given me over the years. But at the end of the day it is a drug that can do harm. Sorry to be so pessimistic, depression as you know is part and parcel of RA
    • mike42824
      mike42824 carole78111

      Posted

      Thanks for the "heads up" Carole - I'll have to look into that!!

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