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Scared What's next?

alphablue68alphablue68 Posts: 7
edited 12. Sep 2014, 18:27 in Living with Arthritis archive
Hi everyone.
I have been in and out of hospital in the last month with pneumonia and pleural effusions, and been diagnosed with Rheumatoid arthritis. Im 30 years old and to be honest im really scared. Over the last few years my joints have been painful and no doctor took it seriously until now! I have been given a date to see a Rheumatologist in 6 weeks time but don't really know what is going to happen next.
If anyone can give me any information on what to expect I would be extremely grateful, as I am quite scared.
Thank you for your time
Alphablue68

Comments

  • LignumVitaeLignumVitae Posts: 1,972
    edited 30. Nov -1, 00:00
    Hi Alpha

    It sounds like you've had a rough time. I really hope now is your opportunity to stop being scared because you are now on the road to treatment. Expect lots of questions about your joints and maybe an examination, x-rays and blood tests. It may help to keep a diary about your symptoms - they may ask what hurts and when, what makes it worse etc.

    There are lots of different treatment options, most don't work immediately and some work for some people and not for others so it may be a case of trial and error with different meds until one ticks your boxes. We all get a bit scared at times wih arthritis (it's quite a beast) but do feel free to come on here and chat or ask questions. We are all happy to share our experience and support each other.

    LV
    Hey little fighter, things will get brighter
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, I wish I could tell you what to expect but I cannot because no-one knows. :( There's no doubt you have been having a rough time but it sounds as though you are finally on the right path. The first rheumatologist I saw happily told me that I wasn't an auto-immune arthritic but, as time moved on, I proved him wrong. He had retired by then but no matter. :wink:

    An auto-immune arthritis is a complex beast, there are close to two hundred kinds and diagnosis can take some time. Blood tests and Xrays will be involved so all I can recommend at the moment is this: keep a diary, detailing the levels of pain, tiredness, stiffness, what makes things worse and what improves matters so when you meet the rheumatologist he will be able to gain a better all-round picture of you. Who diagnosed you with RA? If it was your GP then please remember that they know a little about a lot but at least you have been referred to someone who knows a lot about a little - this, to my mind, is encouraging although I understand it won't appear to be like that to you.

    I've had a busy day so have to go, but I will be back later or tomorrow. I wish you well, please keep in touch so we know what is happening, that will help us to better support you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • alphablue68alphablue68 Posts: 7
    edited 30. Nov -1, 00:00
    Thanks for your relies.
    LignumVitae, The doctor in hospital has a suspicion its was RA, but all tests have been negative. Exept a vague test that suggests that its autoimmune in nature the first hospital trip. When I was taken to hospital 10 days later, the Rheumatologist confirmed it was RA.
    He started me on Prednisolone and in 6 weeks putting me on Axathioprine. What are these drugs like? Also what is the purpose for the steriod treatment card I have to carry? What will happen if I suddenly stop? Im so sorry with the bombardment of questions. Just have so much swimming around my head.
    Alphablue68
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I hope he's put you on a fairly low dose of pred: it should help you to feel much better but they are only masking the symptoms, not tackling the root cause of the disease. You need to carry the card in case of further health troubles, other doctors must be aware that you are taking the steroids because they can impact on any other treatment you may require. If the dose is fairly low then stopping them should not be a problem but it shouldn't be done suddenly. I have not taken the other med but I know it's the same group as my first med.

    My first medication was suplhasalazine which is in the DMARD family (disease-modifying-anti-rheumatic drug) and over the years others have been added and taken away. Aziathoprine is also in this group. Auto-immune arthritis is caused by an over-active immune system, so these meds are designed to suppress it, the theory being that this will lead to a reduction in disease activity. Once you are taking it, it is important that you have the annual 'flu jab and increase your hand hygiene to help reduce the chance of catching infections. We are more prone to them because our immune systems are reduced. I now frequently wash my hands and have anti-bac wipes to hand for when out and about, plus hand gel: I rarely catch colds or other bugs. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12barbara12 Posts: 20,945 ✭✭
    edited 30. Nov -1, 00:00
    Hello alphablue68
    And welcome to the forum,
    Sorry I wont be able to help,I have OA at the min,like you they cant quite find out what it is. :?
    You will get lots of advice and support on the forum so you always have someone to talk to... .make sure you make a list of all pains, swellings, rashes, and anything else you can think of to take to your rheumy appointment..I do wish you well and please let us know how you get on...
    Love
    Barbara
  • alphablue68alphablue68 Posts: 7
    edited 30. Nov -1, 00:00
    Hi all and thanks for your advice and answers.
    Im on 20mg a day of prednisolone then 3 weeks time 15mg. Is this a high does or low?
    I will definitely make a log of my pains as lots of you nice people have suggested.
    There is so much swimming around my head, its good to know that there are nice people on here to give advice. I am greatfull of this!
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    Hi and welcome to the Arthritis Care forum family! I can only add to what everyone else has said. Before you go to the Rhumatology appointment write down all the questions you want to ask the Rhumatologist and remember to take the list of questions with you, as previously I totally forgot to take the list and totally forgot what I wanted to ask him!!
  • stickywicketstickywicket Posts: 26,000 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello there. I've just bumped up a former thread by Toots about her first rheumatology appointment. It might help. I do hope so :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • tjt6768tjt6768 Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi and welcome from me too..
    I am glad that you're getting to see a rheumy soon... good adbice given somfar as regards to writing down questions etc.
    if possible, take someone with you as you may not be able tomtake in what is said at the appointment. Or take notes.
    I know that it is all a tad daunting.. but at least you are on the right track.. it could be a long and slow process so please don't expect miracles.
    I have had a few doses of prednisone but am not familiar with the other. I take sulphasalazine along with injected methotrexate and pain relief.
    We are always here for advice and support etc.

    Keep us up to date.
    Best wishes :D
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • FelicityDFelicityD Posts: 39
    edited 30. Nov -1, 00:00
    Hi,

    I do share your fear. I am in a similar position as you. I've recently been diagnosed with RA too. Initially, I didn't really understand all the terminology used and what all the meds were for and did. I felt really overwhelmed by it all. Now, I've started to process details and becoming familiar with it all. I keep researching what I don't understand and asking questions here on this supportive and knowledgeable forum and who ever will listen:)

    Don't every feel a question is too silly to ask! Believe me I've asked a few myself! I found keeping a notebook handy to write down all my thoughts and questions useful for my next appointment.

    Felicity
  • alphablue68alphablue68 Posts: 7
    edited 30. Nov -1, 00:00
    Hi all!
    Thank you for all your advice, kind words and support!
    It has already made a big difference knowing that there are so many nice people on here.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    When I was first put on pred (during a rough three months off everything) I was given 20mg per day for three days, then I reduced to 15 for three, then ten for three and I stayed on 10 for three years. Some on here have had doses as high as 60mg (which isn't pleasant, apparently) but the norm seems to be around the 20mg mark. When I decided to wean myself off I took a year to do so, due to the length of time I had been taking it. If you are on for the short-term reduction and stopping shouldn't be too bad. Please take it first thing in the morning as this mimics your body's natural production of the same stuff - taking it later in the day or the evening can interfere with sleep. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • alphablue68alphablue68 Posts: 7
    edited 30. Nov -1, 00:00
    Hi everyone!

    Just a little update, finally saw the rheumatologist today. Still in the dark as to what is wrong. He believes it could be lupus! But I'm not too sure, as I have more symptoms of rheumatoid arthritis and too few of lupus from what I understand from it. But he is the expert! I suppose he needs to go down all possible routes!
    He wants to take me off prednisolone (thankfully) and put me on Azathioprine. Though will still be on pred for a while longer!
    I don't know much about lupus and I would rather have neither lol.
    If anyone has any advice whatsoever I would be very greatfull!

    Thanks everyone!
    Alphablue68
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I've not taken that one but it's another in the immuno-suppressing drugs family which are standard fare in treating RA (and maybe other forms of auto-immune arthritis). It's a crossover drug in that it can be used after transplant to stop organ rejection, or in treating ulcerative colitis. For RA I gather that the initial dose may be quite low and then steadily increased to a certain point but don't quote me on that! :wink: As it is an immune-suppressant then you must ensure that your GP knows you are on this medication as you now qualify for a 'flu jab. We are more prone to catching infections once our immune systems are suppressed so it is important to increase hand hygiene and to avoid potential infection areas - if friends have bugs keep away from them until they are better.

    Both Lupus and RA are auto-immune conditions - as I said in an earlier post to you it can take some time to accurately diagnose what is going on but now we know there is an auto-immune issue underlying what is happening and this is the first step in getting to grips with whatever it is. Good luck, I hope the drug suits you and you soon begin to feel some benefit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 26,000 ✭✭✭
    edited 30. Nov -1, 00:00
    Thanks for the update alphablue 68.

    Well, you definitely have an auto-immune rheumatic disease even if they're not sure which one. I hope it will get identified eventually but at least you're on 'proper meds' and tailing off the pred sounds good.

    If you want more info on Lupus this is an OK site http://www.lupusuk.org.uk/
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • alphablue68alphablue68 Posts: 7
    edited 30. Nov -1, 00:00
    Thank you all for your kind words and great advice and information!
    You have all been a massive help and I am extremely greatfull for all you wonderful people on here! There is so much to take in and it helps a great deal to put my mind at ease!
    Thanks again! You are all great people!
    Alphablue68
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