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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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  • syedq51
    syedq51 themorninggirl

    Posted

    Hi, as I mentioned earlier, I am a patient of RA. My consultant prescribedthe same medicine which u are taking 2 tabs a day but now since my condition is under control the doctor has reduced the dose to 1 tab a day. Methotrexate 2.5mg is the main medicine has been reduced to 7.5mg once a week. Predinsolon 5mg which is a steroid has been stopped completely. I take one tab in case of severe pain plus vitamin c and d tablets.  I, advise you to avoid eating beef, potatos and animal fat, take hot showers, keep your weight under control, exercise regularly but consult your doctor before u do that. Good luck
  • lyn1951
    lyn1951 themorninggirl

    Posted

    I use my ESR and CRP results (blood tests) to see if I am improving or getting worse, I can usually tell the specialist if my results are going to be high or low depending on the amount of disability and pain I have at any one appointment, my last appt, I announced to her my bloods must be high, I am in so much pain, she agreed and read off the results which were not pretty.

    Exercise - as per syedq51, you really have to pace yourself, but you must move, I swim or try to 3 times a week at the local heated pool, I lie, as i don't swim as such, but tread water, row myself around with my arms only, stretch slowly and carefully so i don't hurt myself too much, and then do some more treading of water, rowing, stretching, I can do about an hour of this at any one time, but had to build up to that time.

    Weight - I have a real battle to keep my weight down, very important, I have found a really good dietian who has been a big help with charts for the fridge door about what I should be eating and how much.

  • themorninggirl
    themorninggirl

    Posted

    Hi, thanks, I don't have any weight problems and have a fairly healthy diet, also do moderate exercise x. Mostly I'm just confused about the diagnosis tbh rather than how to manage it and wondered if anybody else had been told similiar. Thanks

    • laura09552
      laura09552 themorninggirl

      Posted

      Hi, I am in exactly the same position as you in terms of diagnosis, they are reluctant to label it at this stage but palindromic, rheumatoid and lupus are all possible in my case, just been started on hydroxychloroquine 200mg twice a day and naproxen 500mg twice a day. I think because some of the drugs are quite aggressive and have some horrible side affects, they want to be sure hence I think they see the hydro as a softer option.

      My symptoms started over a year ago so I know how confusing and frustrating it is to not be able to label it, I feel if I 100% knew what it was it would be easier to start getting my head around, almost like a fear of the unknown if that makes sense?

      I suppose it's a fine line for medics to respond quickly if it is RA but not overreact or be premature in diagnosis and meds if it's still not clear, especially if you are seronegative.

      Anyway, just know that you are not alone in this crazy unwanted journey, best of luck.x

  • Gloria814
    Gloria814 themorninggirl

    Posted

    Hi

        For many the diagnosis changes over time depending on symptoms and blood tests.   I mean it can go from pallindromic to RA or psoriatic RA or even lupus.   Often the doctors go by combination of symptoms , xray/ ultrasound/ MRI and observation

        Unfortunately it is often a long process to find the right medications to work for ea. person.  No one reacts the same way to each drug.   

        Many people start out with severe symtpoms from the very start but mine has progressed slowly over time/  getting more painful etc in various joints.   For a long while my only symptom was severe fatigue not relieved by rest

        Good luck in your journey.  Keep reading and posting and following up with your nurse or md.   And continue to ask many questions and keep a journal of symptoms on a daily basis for yourself and the doc/ nurse who follows you

    • syedq51
      syedq51 Gloria814

      Posted

      Hi, You are absolutely right. This diseases progresses slowly until the patient is in acute pain and his life becomes miserable. We should continue to consult the physician regularly esp when we notice any change in our condition. My physician conducts lever and kidney function tests every six months to see if the medicines I am taking are not affecting these organs. Sometimes when I feel comfortable, I skip taking some medicines for few days and when the pain starts, I restart taking RA medicines or minimize the doses according to my condition. Thanks for the input
    • themorninggirl
      themorninggirl Gloria814

      Posted

      Thank you Gloria, good idea think I am going to keep a diary from now on, tbh I think I don't mention enough symptoms as I have just got used to some of the pains as 'normal' and manage them. So if I keep a diary and note down everything, it will give a better indication of if the meds are helping or not. Thank you x.

    • themorninggirl
      themorninggirl syedq51

      Posted

      Thanks, I've been told it's best to keep going with the meds not skip. I'm planning on keeping positive and not ending up with a miserable life, fingers crossed! Hope you can feel better soon.

    • syedq51
      syedq51 themorninggirl

      Posted

      Thanks for the advice. I will stick to the doses prescribed but I am worried about the side effects.
    • themorninggirl
      themorninggirl syedq51

      Posted

      Yes my nurse specialist advised me to keep a diary of any side effects and let them know of anything major to swap meds etc. But her advise was that if don't take meds and get joint damage, that is irreversible, whereas side effects can hopefully be controlled and worked upon.

    • syedq51
      syedq51 themorninggirl

      Posted

      Yes she is absolutely right. In my case I took all the medicines regularly until my condition became stable. After almost one year my physician readjusted my doses and now I am on a minimum dose. Some medicines have b÷n stopped. Regular exercise controlled diet and med treatment are the main keys to speedy recovery.

    • Emily1234
      Emily1234 themorninggirl

      Posted

      Hi I just wondered how you are getting on with hydroxychloride? Do you have any side effects?
    • syedq51
      syedq51 Emily1234

      Posted

      Hydroxychloride is given to control inflammation of the joints. But like other medicines it has some side effects. After using it for almost 2 years my family and myself have observed that my face and scalp skin has become darker than before with some light beige color spots on my forehead. All my friends ask me what happened to my complexion. So initially after consulting my doctor I reduced the dose to one tab daily. And now finally. I have stopped it completely at my own risk. This is my 3rd week without this tab but no pain. I am taking methotrexate 7.5mg once a week and some vit c and d tabs. So far so good. Let us see what happens in future. My skin bcame photosensitive so I wear a hat or put a loose piece of cloth on my head when I go out in de sun.
    • themorninggirl
      themorninggirl Emily1234

      Posted

      Hi I've only been taking it a week and a half so probably too early to tell. I've just been told I need yearly eye checks which I have anyway. The discolouring mentioned by Syed below has confused me as I was told that was a side effect of methotrexate rather than hydroxy, but I do wonder if it is possible that many of these things are similiar for both/all the meds. 

    • Emily1234
      Emily1234 themorninggirl

      Posted

      Hi there me again how are u getting on with the meds now you've been on it longer? Hope you are doing well x

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