first rheumotiology appointment advice please

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tam1272
tam1272 Member Posts: 15
edited 24. Apr 2014, 15:20 in Living with Arthritis archive
im waiting for my first appointment at the hosptial with a rheumatiodologist. ive had some blood tests done already which came back positive to arthitis. could anyone give me some advice on what to expect and should i prepare anything for it. feeling very scared and alone at the moment.
many thanks
tammie :?
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  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi Tammy;

    There was a very useful thread describing what to expect at your first appointment. It was posted on 05 Dec 2013 by our dear friend Toots. You could try searching for this using the forum search above (not the main site search at the top, but just below that). Her thread was titled: Pocket Duties Please - First Rheumy Appt. and she did a great job outlining what happened during her first appt. I'd try to find this one. If you have trouble, post back and I'll help you.
    Best wishes and welcome, xxAnna
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Ha ha I was gona suggest the same thing as Anna. :D

    (((Hugs)))
    Xx xX
    Healing Hugs
    Debbie.x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I've found that thread and bumped it up for you, tam1272. Your first appointment will be very different for you than mine - I did not have clear enough symptoms so was told I didn't have an auto-immune arthritis; I proved him wrong. :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Teapot
    Teapot Member Posts: 271
    edited 30. Nov -1, 00:00
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    Hello - I took the advice from many on here and went armed with a notepad and a list of questions and the symptoms I had so that I did not forget anything. The Rheumy did not mind and said it was better than getting home and remembering something you did not ask. I do this now with any appointment I have even the GP, they really don't mind. What also helps is that I write in my diary each morning at breakfast of how I feel. Nt very exciting but it works for me. Good luck
  • ELAINE55555
    ELAINE55555 Member Posts: 123
    edited 30. Nov -1, 00:00
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    My advice, for what its worth, would be to take someone with you if possible. Two sets of ears are better than one! Good luck.
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    hi I just thought I would update you all. I spoke to the guys on the helpline a couple of times and would firstly like to thank them for there advice and support.
    I have prepared all my notes ready for my first rheumy appointment and have decided not to wait for the nhs.
    I have booked a private appointment for Monday the 24th February. im very nervous but cant wait for some insight to what is going on with my body as I know something isn't right.
    wish me luck and will be in contact soon to let you know how I got on.
    tam xx
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi,

    Good luck for Monday.

    Getting a complete diagnosis isn't always straight forward with arthritis especially the auto immune types as there are so many, about 200 I think!! Please don't assume you'll come away on Monday with all of the answers .... Hopefully you will but please be prepared that you may not!!

    (((Hugs)))

    Xxx xxX
    Healing Hugs
    Debbie.x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Tam
    Sorry I missed this, but I do hope you have a good appointment..and yes make sure you take a list of questions and anything you think they should know..good luck x
    Love
    Barbara
  • stickywicket
    stickywicket Member Posts: 27,715
    edited 30. Nov -1, 00:00
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    Good luck from me, too, Tam :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    Hope your appointment goes well for you Tam. What a good idea to take a notepad with you. Do let us know how it all goes, sending good vibes. Ritwren.
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    hi well I really don't know what to say.

    I had my appointment. I was all prepared with my diary and symptoms.

    he read my referral letter, told me to get on the couch. had a look at my knee which has been causing a lot of pain and given me a limp and just said oh that's just wear and tear, then looked at my hands and made me move my arms about abit and said I have inflamed tendons, gave me a steroid injection into my bum and that was it.

    10 mins !!! I don't know how quick a steroid injection is meant to work but still woke up in pain last night and still feel in the same amount of pain today.

    I don't know what to do. I have an appointment with my employer tomorrow as I have been off sick since December.
    should I just go back to work in pain and just deal with it!
    please help
    tam x
  • Nicholajx
    Nicholajx Member Posts: 5
    edited 30. Nov -1, 00:00
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    hi, I am 34 and have just been to my first appointment, I have suspected inflamatory arthritis and have to go back for scans this is week 8 and they won't give me injections until I've had scan results back.

    How r u feeling now?
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    I still feel exactly the same. I riggle all night cos of pain and discomfort. i wake up with sore feet. my neck and lower back hurt. my hands ache and weak. something isn't right but now i feel very depressed cos i feel like people think Im making it all up.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hmmm, I don't know what to say. 'Wear and tear' is osteo arthritis and is very common. With that it is a case of PAUSU (put up and shut up) until things reach such a pitch that a surgical intervention is required. I have OA in both knees and both ankles thanks to the damage caused by my auto-immune arthritis.

    Steroid injections can either work or not. You may not feel the benefit from the depo he gave you until two or three days have passed - and it may not reduce the pain either. I would still keep a diary of symptoms and wait for an NHS appointment, in the meantime do what you can not to over-stress the joint too much - much easier said than done, I know. I can't help on the work front because I was self-employed (I had a lovely boss :wink: ) I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    Sadly i think the nhs doctor is the same one I've just seen. i know deep down i won't be able to do my job . my lower back is so sore today i can bearly walk let alone work. i have my union rep calling me back today before my interview so hopefully he can help.
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    hi all. just thought I would update you all on how im getting on. I had my NHS rheumy appointment and I have been diagnosed with polymyalgia and GCA and im only 42.
    I have been put on a high dosage of oral steroids 60mg per day. I have been on them for 8 days now and haven't seen any improvement with pain. the only pain which seems to have gone is the jaw pain connected to the GCA.
    im worried about the high dose because of side affects etc. I seem to be very emotional and cry for no reasons and very snappy the next min.
    how long should it take to improve? I have lost my job and no I couldn't cope with working at the moment.
    has anyone else had this?
    tam x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, no I haven't had this or such a high dose of steroids. I guess that polymyalgia is akin to all-over pain? (I can empathise with that) and what does GCA stand for? I'm familiar with the majority of sets of initials on here but every now again I'm thrown. :)

    60mg of pred is a high dose and that will explain the mood swings - is your sleep also being interrupted? I have no idea how long it will be before things improve and of course you are unable to work. I am so sorry that you lost your job but you don't need the extra pressure, do you? Mind you the extra pressure of little or no income isn't helpful either.

    Health troubles can start at any age - we range on here from two years old to late eighties. It's a pig of a disease. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi,

    I am sorry you are suffering with the effects of steroids. I have this problem too, not fun! I have learned, finally, to not pay any attention to steroid anxiety. The drug is making you feel this, so for myself, I just go with it now and do not take the feeling seriously. I'm on a high dose at the moment too, and feel the effects of disease are so much worse. It may really help send your GCA into a remission of sorts, so do persist! Then, you may not need to take them again for a while. This kind of dosing is pulse-therapy and is the best way to minimise the negative effects of steroids, short of not taking them at all :)

    GCA (for DD) stands for Giant Cell Arteritis a type of immune-mediated vasculitis. Isn't that correct Tam? I'm being checked for a vasculitis at the moment too, so have been educating myself on the different types. Definitely falls into the "pig of a disease" category.

    Don't pressure yourself Tam, about working. You need to rest and help your body at the moment, not be pushing yourself. You have steroid anxiety and you do not need to double this up for yourself with additional worries. These immune-mediated diseases really respond negatively to stress. Please take it easy and try not too worry. Pamper yourself!

    Take care,
    Anna
  • HannahT
    HannahT Member Posts: 38
    edited 30. Nov -1, 00:00
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    Hi all,

    Sorry to hijack this thread tam. How are you doing? I feel that I will be in a similar situation to you soon. So, just wanted to prepare myself.

    Anna or anyone who is able to help, where would I find this thread that was suggested earlier on 'Pocket Duties Please - First Rheumy Appt'?

    This is exactly the kind of information I have been seeking. It does not come up when I search for it.

    Sorry again, I am not so great with computers!

    H
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hannah, I bumped the post up for you. Just check under new posts, it's there.
    Best wishes, Anna
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    yes my sleep is really bad at the moment not only the steroids but my legs are so painful at night that all I do is wriggle to try and get comfortable. The pain just doesn't seem to be going. I have been on 60mg for 9 days now and the only pain that has gone is in my jaw.
    I still have pain in my neck, shoulders, arms, hands, lower back, knees, lower legs and feet.
    im not due to go back to the hospital for another 5 weeks yet. I really was hoping that I would have had some relief by now.
    tam x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Pred is not necessarily a pain reliever - what pain meds are you taking? DD

    PS Thanks for the explanation, Anna, it's much appreciated.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    That sounds terrible Tam, I hope the pred starts to work soon.
  • tam1272
    tam1272 Member Posts: 15
    edited 30. Nov -1, 00:00
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    Im on 60mg steroids. 30/500mg co-codamol and 25mg amitriptyline.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Tam, maybe you need to talk with your rheum's office about the pain levels? Maybe they need to know that the PMR isn't responding yet to steroids?

    They can reassure you if you need to wait longer, or suggest something different for the pain.

    Take care,
    Anna
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