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Posted , 7 users are following.

I am recently diagnosed with RA but I am only on pain killers. I was told I was going to be put on methotrexate but I wanted to think about it. I have been going to the doctor for over 4 years with various symptoms but was diagnosed about six months ago. I can live with he pain at the moment but for the pass two weeks the skin on my hands feel as if they are scalded, is that ? Sometimes i feel so hot and I feel exhausted.  I had bloods and was told my whatever is so high.  I have been trying to make an appointment with the rhumetoid nurse but there is only one and she is part time.

i am so sorry to go on but just feeling so frustrated.  Because I don't have any obvious signs at the moment people think there can't be much wrong.

thanks

 

1 like, 9 replies

9 Replies

  • Posted

    If you really do have RA then you will eventually need more than just painkillers. The idea of using methotrexate at this stage is to avoid long term damage to your joints. Until what are called DMARDs were developed patients with RA would slowly develop twisted joints due to the damage done to them by the disease. Disease Modifying AntiRheumatic Drugs changed all that and these days it is unusual to see people with badly damaged joints who are crippled and stuck in a wheelchair. It is best to start these drugs before the damage is done - which is why although YOU can't see any obvious signs it is possible the doctors can already or they probably wouldn't have diagnosed RA.

    RA is what is called an autoimmune illness - your immune system doesn't recognise your body as self and is attacking the joints and causing damage, inflammation and pain. The sweats and fatigue are part of that. They won't necessarily go with methotrexate but the long term problems should be reduced if it works. If not they will try something else. Methotrexate can take a few months to work - so it isn't much use leaving it until you can see things actually happening.

    • Posted

      Thanks for your reply, I am on narproxen for the pain.  Think to be told you have RA and this is the medication was a bit too much so I decided I needed more info.  My doctor gave me this site but at least when I go back to see the consultant I will have questions and a better understanding of my illness.  My finger, wrist and ankles are swollen most days my fingers all the time.  I am really stiff in the morning and I can just about walk as the bones in my feet hurt
  • Posted

    I was on metho for a while before my cardiologist thought it might be affecting my lungs.  I got interstitial lung disease from RA and probably from years of smoking!  My feet and ankles swelled horribly!  The only thing I take is enbrel and am doing quite well!  The only thing I have is swelling in my wrists and hands and occasionally my wrists ache!  I feel quite blessed that I don't have the awful symptoms that many of you have but it hasn't always been the case!  Good luck and keep us posted!
  • Posted

    Really sorry to hear that you are having such a difficult time. Don't apologise for 'going on' - we understand and 'go on' fair bit too. And yes, you will look fine and feel awful. We all deal with the lack of sympathy that comes with our fever induced rosey red cheeks!

    Have you been refered to a rheumatologist? 6 months is a long time to go without any disease management. If the 'whatever' that's high is CRP, that measures the amount of inflammation in your system and is a marker for how active the RA is. Fatigue and fever is the result of high CRP. Your skin may hurt because your immune system can attack that in RA. It doesn't limit itself to joints. You need to get some help asap. There are drugs that can stop RA in its tracks and yes, some of them have nasty side effects but RA has even worse ones. Methotrexate is the most effective if you can handle the side effects. You must take folic acid with it though and stay out of the sun. Steroids have nasty side effects too but they get the inflammation under control in a matter of days. There isn't any easy solution but 'living with the pain' is not an option. This thing is damaging your body and any damage already done to your bones will be permanent. You MUST get some action on this.

    If you are really determined not to use drugs, there are some reports of good results on this site from changing your diet. However, some cases of RA are severe. The high 'whatever' may be your anti-body levels. That measures how determined your immune system is to take you apart. It makes anti-bodies against what it attacks so lots of anti-bodies against you is bad.

    With RA its important to get on the net and find out what your blood test results mean. It will help you to make wise decisions. A personal example;

    I was diagnosed at the same time are an aquaintence of mine. We both had high anti-body levels. He opted to go 'the natural way' and not take the drugs. I started on the drugs ladder, which took 5 years to get the best combination for me. In the same 5 years his condition got steadily worse and he is now quite crippled, especially in his hands. He has started taking the drugs but the damage cannot be undone.

    Get as well informed about RA as you can and insist that your GP sends you to a rheumatologist doctor as soon as possible. This is not the job for a nurse.

    • Posted

      I have a rhumetologist I was trying to see the nurse as my next appointment is three months away, and you are right it is my CRP that is high. Does RA cause you to be hot. I seem also to run a temperture quite often is that part of it as well?
    • Posted

      I remember going to my rheumy a few months ago and told her I wasn't feeling well.  Turns out I had a low grade fever and blood tests confirmed inflammation.
    • Posted

      Many autoimmune disorders cause you to feel hot, sweats and fatigued. You should have been given an appointment withthe nurse to discuss the implicaitons of RA and the treatment as they can answer the same questions you are asking here.

      When you get a response here make sure it applies to the health care system you are in. In the UK, the NHS will supply your medication - but you can't just go straight to something like Enbrel, you have to work through a standard list and can only progress to the next as one doesn't work for you for whatever reason.

      Keep trying to get hold of your specialist nurse.

  • Posted

    Hi, everyone can have a different outcome with RA. Please do not think that because you do not have all the symptoms some of us have that your pain and discomfort is just something to live with. RA many times is a slow progressing disease. I hope you feel better soon. I did not have good look with Methotrexate but it works for many people. Best of luck to you and I wish you better health.
  • Posted

    It is hard coming to terms with the diagnosis but I hope you can see from the replies that it s quite urgent you begin some kind of disease modifying treatment such as methotrexate. It takes a couple of months to see if it works and there are further options if it doesn't. Just go with what your consultant suggests . They really do have up to date info on what may work and monitor closely. Keep trying to get an earlier appointment.

    Yes- the fatigue and  temperature go with it. Plus sometimes lack of appetite and depression.You must be feeling rotten if you are in so much pain. The NRAS website can give you a lot of info on all aspects of this disease so I really recommend reading it.

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