What to expect?

mld
mld Member Posts: 45
edited 16. Nov 2012, 09:02 in Living with Arthritis archive
I have my first visit to a rheumy on Tuesday morning. What should I expect? I'm really nervous.

I know that I've got to talk medication as the meds I currently take are clashing with those I take for my mental health!

What else is likely to happen?

Margaret

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It's been many moons since my first visit but it's likely they will examine the sore joints, maybe request more bloods, an Xray or maybe an MRI, they should ask about your symtpoms, swelling, pain, discomfort, what makes things worse or better etc. It's worth making a list of things that are concerning you and make sure you ask them to repeat an answer if you haven't understood what they have said. Good luck, please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    Hi Margaret

    I cant advise you because I have OA, but I just wanted to wish you every luck for Tuesday. Dont forget, they are there to help you. Let us know how it goes wont you.
    Karen xx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi
    I've got OA as well.....but pain is pain. :roll:
    Make a list of what you want to ask/know....he might cover these things without you asking.
    If possible take someone with you....if you are anything like me you will be so busy trying to remember {list or not :lol: } what to ask that you'll not take in all he says....I find when I go out I've picked up a bit about something but not all of it....thank goodness for OH :wink:
    If you havent anyone to go with you at that particular time.....can you take a recording? I've heard some people mentioning that
    Love
    Hileena
  • mld
    mld Member Posts: 45
    edited 30. Nov -1, 00:00
    Thank you, My husband is going to come with me. I also have a notebook outlining where I get pain and when - well I could be writing in it all the time, but occasionally I get extra pains on top of the normal pains! I know that you all know what I mean. :)

    I suppose I'm not sure what to wear - jeans and shoes or some looser trousers and trainers?

    I wish that Tuesday was already over and done with!

    Margaret
  • Susiesoo
    Susiesoo Member Posts: 358
    edited 30. Nov -1, 00:00
    Just want to wish you good luck for the appointment. I'm sure it won't be as bad as you are expecting, especially if you have someone with you.

    Will be thinking of you. Susie
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi margeret
    Its a long time now since I saw a rheumy ,but I do remember all the questions, if he or she is good they should go back to when things started for you, but please write a list of questions.
    They will also do xrays,bloods,
    Wishing you well with it all x
    Love
    Barbara
  • frogmorton
    frogmorton Member Posts: 29,883
    edited 30. Nov -1, 00:00
    Hi Margaret

    Tracky bottoms might be an idea??? So they can 'move you about' with some dignity.

    Also they will likely do chest Xray and maybe hands/ feet too.

    Almost certainly they will do bloods :shock: and my clinic are now doing a urine sample every time we go.

    Keeping the list and taking another pair of ears is always good :wink:

    Love

    Toni xxx
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi Margaret

    Sorry can't help, just want to wish you good luck for Tuesday, keep us posted how you go...............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello mld, how did you get on today? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mld
    mld Member Posts: 45
    edited 30. Nov -1, 00:00
    :cry: The face says it all. I woke up this morning and could bend my knees and get out of bed without any trouble. i then went to clean my teeth and my index finger on the right hand let me clean my teeth whilst holding the brush properly. I then had a shower and could move my leg in and out of the bath without pain...

    Basically I think I had doctoritis today - my body said to me that there would be no swelling and no pain. I don't understand it. Today was the first time since 19th July when I had no pain. i saw the consultant and a junior doctor, they have given me more blood tests and x rays to do and have told me to keep off Naproxen. I wonder if they think I'm lying, although my Rheumatoid Factor (or whatever it was was high last time).

    But now, I ache all over. The long bus journey home has played a toll on every joint I think.

    The junior doctor has given me a prescription for cocodamol, "if the pain gets worse". Not many tablets.

    And then I took my prescription to the chemist who then turned to me and said he was unhappy to give me the codeine due to all the mental health medication that I take. So I then had to persuade him that I would need it ! :roll:

    So that was my day. We (hubby and I) also had lunch out (yum) and saw an exhibition in the Turner Contemporary gallery. Very good it was too.

    Thanks DD and everyone,

    Margaret
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I would doubt they'll think you're lying, Margaret. I'm sure they'll base their judgement on rather more than just how you looked today.

    You call it doctoritis: I used to call it adrenaline. I've usually found that, in a stressful situation, my joints behave. Afterwards they make up for it.

    I presume you have/will have another appointment. I'm sure they'll get the right diagnosis after all the tests.

    The lunch and exhibition sound like good restoratives :)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh blast: just like toothache it vanishes as soon as you ring the dentist. :roll: I've had a knee swollen beyond all reason and yet I was told that I didn't have an inflammatory arthritis - guess who proved them wrong? :wink: Arthritis is a temperamental beast and all I can recommend is that you keep a record of what happens and when, being factual and straightforward. Sticky's on the money - I too reckon that adrenaline is the culprit. We can summon it for things we want to do but the bl**dy stuff appears when we least want or need it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mld
    mld Member Posts: 45
    edited 30. Nov -1, 00:00
    I do have to go back in December for a scan of my hands and feet, and I am going to get an invite to the EA clinic in January. The doctor wrote it down as EA and said ?early arthritis clinic????

    I'm just in so much pain at the moment, I wish that old adrenalin would pump around my body now!

    So, because of being given co-codamol I will try to get to the GP later this week to either ask for more, or an alternative, if there is one.

    Thank you for your replies. I feel a little, no, a lot better now.

    Margaret
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Just a thought, Margaret. If getting to the GP is difficult, that's the sort of thing that mine would be prepared to deal with as a telephone consultation. Does yours do those?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    Hi Margaret

    I take anti-depressants and I take co-codamol. Never had any problems. But, on saying that I suppose everyone is different and has different types of deppression. Isn't it always the way that when you go to the doctors the problem you have just calms down. But, dont worry they see this all the time and are used to it. Good that you and Hubby had a lovely meal out.
    Karen xx
  • Nicchick
    Nicchick Member Posts: 191
    edited 30. Nov -1, 00:00
    My rather brilliant GP is happy to discuss stuff over the phone, as am I! Saves time all round :)

    I think (and hope) that the professionals notice all the other elements that go along with all the forms of arthritis so that even if you are having a good day they can see it's been surrounded by very bad days!

    Best of luck and I can recommend keeping a record of events - if I had a time machine I would travel back and say 'Nicola, keep a record of all the appointments and prescriptions...
    Nx
  • slim0311
    slim0311 Member Posts: 4
    edited 30. Nov -1, 00:00
    HI all
    My name is Lena i am new to this site was trawling the internet and found it by accident. I have been diagnaosed with inflamatory artheritus start of R/A ( dont know how they reach that conclusion) but have been told it is the very early stages of RA even though it doesnt show in my bloods.
    I have been given Hydrocychloride to begin with which gave me severe blurrd vision and a rash and was taken off that and left with a small black squiggle in my eye so have got to have an eye test. Then i was give MEthotrexate with Folic acid which i informed the nurse folic acid makes me violently sick to which i was told it was not hte same as when i took it when pregnant years ago to try it. These made me violently sick and gave me a severe headache where i was unable to lift my head from a pillow and i came out in hives. Rang the nurse at the hospital who said stop them immediately. I am really upset i feel these meds are making me worse i do have pain which i mamage with Ibuprofen and paracetamol i dont want the pain to be totally gone as i feel i could make things worse if i numb it completely and dont know my limits. I'm unsure what to ask at the hospital i dont want to take meds if they are going to knock me off my feet, can anyone advise ? Help please

    thankyou for taking the time to read my blog x :(
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Lena and welcome to the forum!

    I am sorry about your RA/inflammatory arthritis diagnosis but you are in good company here and hopefully we will be able to provide some good support and useful advice.

    I am pleased that your arthritis has been diagnosed early Lena because the thinking is that early diagnosis and an early start on drugs can really have a positive effect on the longer term outcome of the disease.

    Some of the drugs can take a while to get used to and can cause quite unpleasant side effects until you do. But it does sound as if you reacted very badly to both the hydroxy and the methotrexate (mtx). But there are many other "disease modifying" drugs to try and, hopefully, when you see your rheumatologist again, he/she will be able to suggest an alternative for you to try.

    You say that you don't want to dull the pain completely in case you make things worse - and I think I understand where you are coming from. But, what you may not be aware of is that the pain in inflammatory arthritis comes from uncontrolled inflammation and it is this same uncontrolled inflammation which can lead to permanent joint damage and resulting pain in the longer term. So, unlike painkillers and anti-inflammatories (eg Ibuprofen "disease modifying" drugs like hydroxy and mtx are intended to damp down the inflammation and slow down the progression of the arthritis. And if they work then, hopefully, that will also result in reduced pain.

    It is hard to accept that, with inflammatory arthritis, the drugs really aren't optional if we want to minimise permanent joint damage but, as I said before, there are lots out there to try so hopefully there is a combination which will help your arthrtis without causing unacceptable side effects. Maybe you will be encouraged if I tell you that I have had RA for 17 years and have tried many (if not most) of the available "disease modifying" drugs and there have only been two which I have been unable to continue due to longer term side effects. And, it is thanks to these drugs - and the newer "biologic" meds - that, 17 years into what was diagnosed as aggressive RA - I still have only relatively minimal joint damage.

    I hope you don't have to wait too long for another rheumatology appointment Lena. In the meantime please do keep talking to us. Many of us have been where you are now and we do understand.

    Thinking of you.

    Love Tilly xxx
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hi Lena and welcome from me too. I see that Tilly, sensible lady that she is, has already given you some excellent advice and, really, all I can do is to say much the same thing though possible in a different way.

    A diagnosis of arthritis is a lot to get one’s head round especially, I would imagine, if you don’t feel particularly bad but have to take meds which do make you feel bad. If you read round this forum you will probably conclude, eventually, that it’s no bad thing that you’ve been diagnosed so early on. Many wait weeks, months, even years for a proper diagnosis and, by that time, damage is done which can’t be reversed.

    I’m sorry you’ve had trouble with hydrochloride (?). Do you mean the painduller Tramadol or the DMARD hydroxychloroquine? (The latter can affect the eyes.) Methotrexate with Folic Acid is probably the most common starter med for those of us with RA but you have been singularly unfortunate to have a reaction to the Folic Acid as this is prescribed to help avoid side-effects of the meth – including sickness.

    I’m afraid an auto-immune arthritis cannot be controlled by anti-inflammatories and pain relief alone. That will relieve the pain and some of the inflammation but what is required is something to hold the disease back. These won’t do that. They were all that were around when I was first diagnosed over 50 years ago which is why I now have deformities all over the shop :roll: However, for the last 10 years, meth has done a great job for me.

    There are other DMARDS out there and other meds if they don’t work. (Read some of AC’s booklets in the ‘Publications and Resources’ section of the website.) You might also need a stomach protecting med such as lansoprazole or omeprazole. What you really, really don’t need is to try to deal with it yourself. I know these meds do sound scary but then RA is a scary disease and it does need the powerful meds to hold it at bay.

    Please let us know how you get on.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • slim0311
    slim0311 Member Posts: 4
    edited 30. Nov -1, 00:00
    hi Tilly,

    thankyou for your kind response i can bring my ra appointment forward from 10th december so will call and rebook. Your reply has been of great comfort
    i have felt as though i am on my own and to find the website i feel will be a great help so many people suffering from some sort of arthur its unbelieveable. I will ask about other drugs and i'm starting to understand that i have to have these drugs to slow down the process. I have been given hydratherapy sessions by my doctors nurse when i went there for my bloods she was very helpful so i will be booking them at my local leisure centre. I recently split up with my husband when i was diagnosed with the disease as he felt he wouldnt be able to cope so i.ve had all that to deal with too and i hear stress doesnt help it either so i am trying to stay calm and concentrate on getting myself well. Thankyou so much tilly for your advice keep in touch. x
  • slim0311
    slim0311 Member Posts: 4
    edited 30. Nov -1, 00:00
    hi stickey wicket ,

    Thankyou for your reply thankyou for your advice it is really helpful. i will bring my appointment forward and hopefully sort another med out. I do feel really frightened as i am facing this alone i have 3 lovely children aged 28, 26 and 23 the first 2 being sons and later my daughter but sometimes you feel you dont want to worry or burden them with your worries, so i'm reluctant to talk with them about how i feel. I'm living with my eldest son, daughter in law and 3 grandchildren at present awaiting a flat off the hosuing association who have put me onto silverband in the que so may have to wait a while. I love my son and his family and they have been brilliant but sometimes i would just love that bit of my own space to relax and rest quietly but there is no where to go in the house for this.
    I have a little king charles who i take for walks but the arthur i think has now travelled into my knees i think as i have slight swelling and pains and stiffnes there now so cant go far. Should i be telling my consultant this now? not sure what to do? Thank you for replying you take care too glad to see you have found a med that agrees with you and it is held at bay. x