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First rheumatology appointment

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Diary
Diary

I've been diagnosed with rheumatoid arthritis by my GP and an orthopaedic surgeon. It was the orthopaedic surgeon who referred me internally to rheumatology, I see him fairly soon as its urgent apparently.. I have high rheumatoid factor, high esa and crp and positive sjorgens. I had other blood tests that I don't know the results of. I have had autoimmune hypothyroid for 10 years. I went to the surgeon as I had a serious accident with my knee and it needs replacing. I'm 50.

I am at a loss as to what to ask the consultant. My hands are excruciating at the moment but my GP is reluctant to give my anything other than codeine until I have seen the rheumatology. Will he give me painkillers? The orthopaedic said I need a disease modifier but will this help with the pain? I'm quite upset abnout it all.

0 likes, 16 replies

16 Replies

  • gillian_25383
    gillian_25383 Diary

    Posted

    Disease modifiers depress the immune system and hence reduces inflammation which reduces pain.If the first one tried does not work they have a list they work through till they get the right combination for you.They do need you to have regular blood tests
  • ama38049
    ama38049 Diary

    Posted

    Hi D., unlike in some cases where the blood tests are negative, here is a clear case of RA. Hence I would ask about which type of RA you are having (I understand that hands are your biggest problem at the moment) and what other joints may be affected. List all your pains/inflammations/sore in the last years and had they gone by themselves or were you prescribed something for it. Mention if you have back/shoulders/neck pain. Mention if your joint become stiff and if it gets worse in the morning. The dr will probably give you RA related meds. There are standard protocols about this. Painkillers you can take right now all by yourself - ibuprofen/advil/optalgin/else - whatever you feel that helps you the most. Good luck.
  • Rowbirdie
    Rowbirdie Diary

    Posted

    Oh -this takes me back to my first appointment 2 years ago. It s such a lot to take in and the pain is so difficult and I felt so weepy.Even though you know the diagnosis is probably RA it s still a shock when they tell you. So take someone with you if at all possible to help remember what they say.

    I was given a corticosteroid jab in my backside which made a world of difference to the pain. It s to tide you over while the disease modifying drug has time to work. So it does wear off after some time.

    They may give you an information booklet, if not NRAS and arthritis research are good websites for info.There is information about initial consultant appt too.

    I tried to get well informed as it made me feel less out of control with all that was going on. It gave useful tips on rest, exercise etc also I knew someone whose RA of 20 years was completely under control by using a biologic .this encouraged me that there are options out there to bring RA under control- but it takes a bit of time to see what will work for each of us. 

    Do let us know how you get on.

     

  • Light
    Light Diary

    Posted

    You could also try reducing the pain somewhat thru diet. Go for a low acidic (no whole tomatoes, oranges, grapefruit, strong coffee, alcohol, etc...), follow a healthy regime, veggies instead of red meats, low sugar.... that kind of thing.

    It might lighten your pain load somewhat while waiting.

    Make arrangements to take someone with you to your first, and preferably all, rheumatology appointments. Write out your list of questions, plus the stuff you want to share, get the third person to follow the questions and take notes and use them as a buffer, because you will be bombarded with heaps of information it might be hard to take on board in one meeting.

    A third person can make sure you've covered all your questions and also go over with you afterwards what the doctor said.

    And keep a kind of diary for these first few months, with details of pain, food, medication and dosage... it could be very helpful later on.

    I wish you all the best for that first appointment.

  • Diary
    Diary

    Posted

    Thank you very much for your replies, I do feel less overwhelmed for posting.
  • huambach
    huambach Diary

    Posted

    Hi, I strongly believe that you have RA, but you must see a rheumatologist immediately. It is extremely important to get a treatment soon. Take notes of everything that is going on with you, so in your appointment, you do not forget any detail. I am dealing with RA for 20 years. It started when I was 11 years old, so I don't remember my first appointments, but now I am extremely strict with my treatment. I am on remicade for more than 10 years and my life is really good now, I am working, studying, I go to the gym, and even I run for 30 minutes everyday. But everything was not so nice at the beginning. I had to use a wheelchair before because of the swelling on my knees. I am telling you this, because it is possible to have a very good life quality if you are positive (stress is the worst enemy) and responsible about the treatment (no alcohol, healthy food, sports, sleeping 7 hours). And again, get a rheumatologist soon. And feel comfortable with him. At the end, he/she is gonna be one of the most important persons in your life. Best luck!
    • tenthirtypm
      tenthirtypm huambach

      Posted

      Your post was very encouraging. My daughter aged 42 has the symptoms of RA and her bloods came back with a raised Rheumatoid Factor of 44. She has in 1 month seen her pain & stiffness get worse and takes Ibuprofen 800 mgms daily. She sees the Rheumatologist this Wednesday. Her diet and exercise is much improved. Would you know what treatment that she would initially be given? I would be grateful for your opinion, as her mother I'm concerned for fee wellbeing with two tiny children age 3 and 11 months. :-)
    • Light
      Light tenthirtypm

      Posted

      Biggest thing (see above) get her to take someone with her who takes a notepad. Write down her questions in advance and get the third person to make sure she doesn't forget anything.

      A first appt can be very overwhelming.

      Put time aside right after to sum up the consultation together. Don't forget to date it!

      This can be very useful later - an RA diary, if you like.

      Good luck!

    • tenthirtypm
      tenthirtypm Light

      Posted

      Thanks very much for your reply. She see the Rheumatologist tomorrow. I've been reading up about methotrexate which I believe will be the drug of choice and I'm

      concerned about the side effects. She worries about her lifestyle with two tiny children and a full time job which she has to continue. I just want her to lead a normal life. Will this be possible? Sorry to have so many bewildering questions and thank you. :-)

    • gillian_25383
      gillian_25383 tenthirtypm

      Posted

      Hi,one thing to remember is it can take up to 12weeks for methotrexate to work so she will need to keep an pain meds at first.The only side effect (touch wood)was nausea and acid reflux.Eventually was switched to self administered injections (apprehensive at first but a doddle)which got rai of side effects.Regular blood tests so anything not quite right is quickly picked up.Good luck
    • Rowbirdie
      Rowbirdie tenthirtypm

      Posted

      Hi

      many people get benefit for RA from methotrexate with no side effects.( especially as the dose is much smaller than if it is prescribed for cancer)

      Others have mild effects - for me it was mild hair loss and feeling slightly brain fogged on the day I took it- so I changed my day to take it to a non working day.

      Others experience some nausea- but there are a variety of ways to get round that if it happens including when the tablets or folic acid are taken.

      Will she be able to lead a ' normal ' life? - some times it takes a while to find best meds , depending on how severe the RA is ,and this can be a difficult time needing as much emotional and physical support as possible. Their aim in treating RA is remission. Make this your expectation too. It iis not curable. But you learn to adapt and stay positive. 

    • tenthirtypm
      tenthirtypm Rowbirdie

      Posted

      Your posting was very encouraging and I thank you so much for that. :-) .. I shall be talking to my daughter tonight and will tell her all this! She is a positive lass really so I'm hoping she'll be ok... I'm nearby and will be always there to support her. Thank you again. :-)
    • Light
      Light tenthirtypm

      Posted

      Will she be able to lead a normal life?

      Yes. Highly likely.

      The beginning is hard, when pain sets in and the meds haven't been sorted.

      So she may need a lot of help for the first few months or more.

      Normal life – whatever that is – follows.

      Did you say she's got small children?

      That will be tough so be prepared to step in as much as possible. She might get fatigue attacks when she simply has to lie down and sleep. And there may be things she can't do in the beginning.

      But it will settle and so will life...

    • tenthirtypm
      tenthirtypm Light

      Posted

      Thank you for your post.  She saw the rheumatologist this am and it was a very good consultation.  She has been diagnosed with the palindromic arthritis which is the precursor to RA.  She has been put on Methrotrexate 10 mgms weekly and bloods every two weeks. She is very upbeat and positive about it all.

      Hopefully it has been caught at a very early stage and aggressively managed so that she will have an early remission.  The folic acid was included in her prescription. Fingers crossed it will be okay. 🤔

    • huambach
      huambach tenthirtypm

      Posted

      Sorry for my late response. I don't know why I did not get the notifications. I am happy that your daughter and you did good at your medical appointment. As other folks told you, at the beginning you (all the family) are gonna have a hard time, everything is gonna be new, your daughter will have to try different medication and probably the first options won't work, but you must be very positive, there is no one single formula for all the patients, in my case it took me 10 years to find the right medication, we tried with different alternatives. I am also with metotrexate + remicade (and folic acid). A personal advice: be very supportive with your daughter. I used to feel extremely bad when asking for help (eating, dressing, bathing), especially if you are an independent person. That could be very depressing. Mental and emotional strengths are really important. Best luck!
    • tenthirtypm
      tenthirtypm huambach

      Posted

      Thank you for your email. We just have to remain positive all the time. It is a worry as it's all so new and uncertain, but we'll be okay hopefully. She has a very good GP and Consultant to are looking after her. Again thank you :-)
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