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Newly diagnosed with RA after some advise and experiences

Posted , 7 users are following.

nicola25275
nicola25275

Hi, I'm new to the forum but am keen to find out some other people's experiences to try and reassure that all this is "normal!" I'm 37 and I've recently been diagnosed with RA following severe foot pain (thought it was gout at first so ignored it for months!). I've been on Hydroxychloroquine 400mg daily for 1 month, and am taking up to 3 acematin tablets daily as well as paracetamol when it gets bad. I had a steroid injection about 6wks ago when the pain got so bad I was struggling to walk - worked like a miracle!. I have now felt pain returning in my knees and am a little lost whether I should take a suggested 30mg course of oral steroids (prednisole) at this point or wait. A Dr gave them to me them last week as Im going on my hols next week, and expressed worry about suffering pain. I've just been informed I need a blood test check up (which the past 2 Drs failed to advise would be coming up - they said I would have bloods taken at next Rheomatologist appointment in 6wks time)  At what stage should I start with the steroids - when it gets worse, or as a preventative now I can feel aches and pains resurfacing? I already feel quite drugged up to the max! Know I should probably go back to the Drs - sick of the sight of them at the moment to be honest, and don't want to be a drama queen! Any advise would be appreciated. Thanks

3 likes, 19 replies

19 Replies

  • hope4cure
    hope4cure nicola25275

    Posted

    If u r not clear when to start steroid meds then PLZ ck with UR doc. I have been thru 

    several tapered courses. It's very hard on the liver and the blood test ck for that.

    soor u r in pain.. I hope to hear you will find meds to give u peace & relief from the pain of RA.

    TAKE CARE

    ((hugs))

    HOPEcheesygrin

    • nicola25275
      nicola25275 hope4cure

      Posted

      Thanks for your quick response. I'm ok smile just don't want it to get as bad as it did before when my mobility was affected. Drs I have seen said it was "suck it and see" kind of judgement but a little hard to judge when new to it all. Sure I'll be fine, and will try my best to get into see "my" doctor, inbetween all his recent hols, lol! Thanks again
    • hope4cure
      hope4cure nicola25275

      Posted

      Nicolas,

      i have RA and many types of arthritis...both hip joint total replacements.

      pain doesn't have to be a daily struggle. I manage my pain accept my limitations and learn to pace my energy. 

      You will find UR way too! 

       

  • linda1947
    linda1947 nicola25275

    Posted

    Hi Nicola,

    Ive had RA for eight years now.  My advice to you would be first seek advice from your doctor, but I would also say that if the doctor has given you the steroids to take then take them.  If the inflammation gets worse then it takes longer to get it under control so maybe prevention is better than cure in this case.  

    RA is something you're going to have to live with for the rest of your life and you will get used to dealing with it on a daily basis, but remember your best friend is your doctor.  I know you're probably sick of the sight of hospitals and doctors but they are the experts, be guided by them.

    hope things work out for you

    lyn

    • nicola25275
      nicola25275 linda1947

      Posted

      Thanks Lyn, do you know how often you can have the injections? - suppose again that depends on the individual. Was a little hesitant to start the tablets if I should wait and could have a second injection? Just a little lost on the best plan. Feel a little lost, but guess Drs can only judge by what your telling them at the time. Thanks again
    • linda1947
      linda1947 nicola25275

      Posted

      The steroid injection should last for a while but if you're still waiting to start on regular medication you may still feel pain.  Steroid injections for me didn't work, they had no effect at all but I recently had a flare due to a virus and I took steroid tablets for ten days and they did work for me.  Like I said, if the doctor gave you steroids to take and you feel as though the pain is getting on top of you then take them. I had lots of trouble with anti inflammatories like Ibuprofen, they affected my liver, so personally I would rather take the steroids, they won't do any harm as long as they're just short term.
  • emmaholder
    emmaholder nicola25275

    Posted

    Hi Nicola

    I too am newly diagnosed and also 37. My pains started in my fingers and hands and its also in both my feet. I was given the steroid tablet to take for two weeks while I had my blood tests and X-rays done before I was to start on the methotrexate. The steroids for me changed nothing, didn't take the pain away but I suppose I wasn't on it long enough to see any benefits. I'm now on 15mg of methotrexate a week and like you feel so drugged up on the ibruprofen and paracetomol. No change yet but hopefully ill see some soon. Do you have a rhuematologist and a RA nurse. They have been really helpful and supportive. I did find the gp a little bit frustrating as they aren't very helpful. My RA nurse saw me sooner than my appt as my fingers had swollen. Really nice of her. 

    The main trouble is getting the pain under control. 

    Hope you get yours sorted soon

    • nicola25275
      nicola25275 emmaholder

      Posted

      Hi Emma, the 80mg injection I had worked within 3days like a wonder, but most of it was mental I think that they were actually recognising I was in pain and doing something for me. I went to see a rheumatologist, and don't expect to see him for another 5-6weeks (was told it would be 3monthly appointments) My own Dr was great, but last two times I've been (to get my DMARDs and for more anti inflammatory tablets) both Drs were very conflicting and as I say leaving me to make decisions I don't feel informed enough to make! Trying not to think about long term, just need a bit of guidance on now. Suppose being new to it though its all a trial for the individual
    • emmaholder
      emmaholder nicola25275

      Posted

      Being new to it it's like having to change how you do things to make it easier and that's just normal every day stuff, with the pain etc it seems like everything is a constant battle. I'm sure when the pain is better than its going to be easier to live with and get on with normal things without the constant pain. Unfortunately it just takes time for meds to work. It's good talking to people on here coz they have lots of experience and have had it for a long time and they give lots of positive pick you ups when you need it. 

  • poemsgalore55
    poemsgalore55 nicola25275

    Posted

    Hi nicola,

    So sorry you are having this problem and pain, especially as you are due to to on holiday. If it is only a 30mg dose, I assume that is 6 per day for 5 days, and the doctor gave them specifically because you are worried about pain. I personally would start to take them so I had my last 6 on the day I travelled. That way they should see you through your holiday, and you don't want to be taking that many pills every day whilst you are away. Steroids won't make you feel 'drugged up', they will reduce any joint inflammation and ease the pain without any sleepiness. Quite the opposite, you will feel much less tired. But be sure you take all six in the morning, or you won't sleep. But be aware, that if you rely on steroids too often and for too long, you can be at risk for getting osteoporosis in later life. Hope you have a good holiday. x

    • nicola25275
      nicola25275 poemsgalore55

      Posted

      Hi thank you for your reply, gave me some reassurance that I'd be doing right taking the steroids now. Don't want to be pill popping for the sake of it, but way I feel now is not going to be a relaxing break if I wait for the pain to get worse which I think at moment it inevitably will. Thanks again for your kindness x

    • hope4cure
      hope4cure poemsgalore55

      Posted

      Nicolas,

      u r so spot on about taking steroid in reduced succession . They remove all the inflammation from my body mad I feel like WONDER WOMEN. It's like I am 21 years old again..Lol as lond as I don't look in the mirror.

      its amazing how inflammation can cause so much incredible pain.

      phsycologically it does give a strange feeling of freedom from the chains of pain and most of all mobility returns .

      think of today as "magnificent"

      as only we with RA ,

      believe in every day,

      life is a "gift".

      peace, luv & laughterbiggrin

      HOPE

      i 

    • hope4cure
      hope4cure poemsgalore55

      Posted

      Poems u r SPOT ON GREAT ADVISE FOR OUR RA friends.

      its nice to talk with u all we can relate thru a common illness.

      that alone give me comfort that others care.

      and right back at ya....

      thank u for sharing.cheesygrin

    • poemsgalore55
      poemsgalore55 hope4cure

      Posted

      I'm glad to have been of help. I  know from experience how awful it is too be in pain and not know what to do without someone to talk to. Sending hugs to you all. x
  • caroline90579
    caroline90579 nicola25275

    Posted

    Hi im 32 and been diagnosed with rheumatoid arthritis in my knees. I am awaiting an appointment with a rheumatologist but I wondered if anyone could recommend anything I could do myself to try and lessen the symptoms? I.e. changing my diet etc.

    Thanks 

    Caroline

    • hope4cure
      hope4cure caroline90579

      Posted

      Hi Caroline,

      I think that once u see UR dr. and he can make an acessment from X-rays 

      he is the best one to evaluate what's best for UR knee pain.

      sometime PT can turn the pain around. It's helped my knees . also icing and taking antiinflammatories to keep swelling down as well as keep the kee up.voltaren gel  RX. Is also good for pain.

      Rest is sometimes the first place to start. Helpfully that will be the best .

      cheers

      HOPE

    • poemsgalore55
      poemsgalore55 caroline90579

      Posted

      Hi Caroline,

      As Hope says, when you go to your appointment you will get the treatment necessary to control your disease and pain. Many people have claimed that changing your diet can improve things, but these claims have not been proved to work. It is said that denying yourself things like tomatoes helps. It doesn't make any difference to me, and tomatoes (especially cooked tomatoes) are very good for you. 

      Some gentle exercise will keep your joints mobile, swimming for example which is a low impact exercise as you are supported by the water. A soak in a warm bath can also help. Hope you don't have to wait too long for your appointment. 

    • nicola25275
      nicola25275 caroline90579

      Posted

      Hi Caroline,

      As soon as I was daignosed I read all I could on the internet and I'm not saying all I found is proven, but I read about adopting more of a mediterran diet. I've started eating more oily fish and lighter meals (which has helped with the nausea from all the meds if nothing else). I'm very new to this, but am all for helping yourself as much as you can. I've changed running for cardio gym and cycling more (which I find is easier to get around than walking at the mo) and at least I feel I'm still being active and it is helping mentally. Good luck with it, and hopefully time will help us find out what works for us x

    • hope4cure
      hope4cure nicola25275

      Posted

      Ask UR doc for PT..that helped me more than anything. Now that I have learned how to move stay strong and relaxing techniques the stress and worry has diminished more & more.

      some treatments now are biologics. My doc has been suggesting Humira or Stelera. They help stop further damage to joints.. The side effects are worth weighting the quality of life as my drs says.

      Take careconfused

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