OMG - panic - appt @8.30am tomorrow

jenfa1
jenfa1 Member Posts: 42
edited 29. Jul 2010, 15:15 in Living with Arthritis archive
I have been diagnosed with RA for about 17 years now and been under different rheumies at different hospitals. I last saw my consultant about 4 years ago when I wasn't interested in taking any meds, my symptoms have been getting worse and finally I have taken the plunge and been referred back. I was given an appt for 30 Sept, but as my consultant has seen me in the past his sec has just rung me and given me an appt for 8.30am tomorrow.

Like everybody is I am scared/reluctant to take meds but think the time has come to stop sticking my head in the sand and accept the condition and help that I need. This ostrich also has to accept and be honest about the symptoms that I have been suffering.

Any advice re questions I should be asking, previously I feel I haven't got out of the appt what I needed.

Sorry it is early but you will need to pack your breakfast not your brie butties so that you can come along with me!

Comments

  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Hi

    I don't know if I am reading your post wrong ..... are you saying you have been diagnosed with Rheumatoid Arthritis for 17 years but not agreed to taking any meds?

    If you are suffering pain, swellings etc I would say welcome tomorrow's appointment with open arms.

    Write down notes and take them with you and remember to refer to them throughout the appointment jotting down anything you wish from the Rheumy.
    Notes to take with you could include your symptoms, when they worsen etc no matter how small or silly you think the symptoms are. Remember, that if you are given medication, much of the meds take months to kick in therefore persevere and keep positive believing that relief is on its way.
    Good luck and keep us posted.
    Carol
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Jenfa

    I don't know how you've coped for 17 years of having RA and no medication. I have OA and can't give you any advice regarding RA meds. All I can say is go to your consultant and I hope it helps to make you feel better.

    Regards
    Sharmaine

    jenfa1 wrote:
    I have been diagnosed with RA for about 17 years now and been under different rheumies at different hospitals. I last saw my consultant about 4 years ago when I wasn't interested in taking any meds, my symptoms have been getting worse and finally I have taken the plunge and been referred back. I was given an appt for 30 Sept, but as my consultant has seen me in the past his sec has just rung me and given me an appt for 8.30am tomorrow.

    Like everybody is I am scared/reluctant to take meds but think the time has come to stop sticking my head in the sand and accept the condition and help that I need. This ostrich also has to accept and be honest about the symptoms that I have been suffering.

    Any advice re questions I should be asking, previously I feel I haven't got out of the appt what I needed.

    Sorry it is early but you will need to pack your breakfast not your brie butties so that you can come along with me!
  • jenfa1
    jenfa1 Member Posts: 42
    edited 30. Nov -1, 00:00
    thanks for your comments, yes 17 years is right! and coped with it with bloodymindedness really LOL. At that point I was told I was too young for hip and knee replacements only 20 years old. I was given NSAIDS but didn't find they helped, all those years ago there wasn't some of the drugs that are used today and also not the evidence that hey helped. I tried sulphasalazine the smallest dose in the run up to my wedding and it made me extremely depressed so was taken off it.

    The way it was explained to me was that the drugs were extremely toxic, that I would need blood tests to check my kidneys, liver and heart wasn't damaged every week and that there was no evidence that it would put it into remission, being a half empty kind of girl I perceived that I would still have the RA but with ruined kidneys and heart and liver. This is why I need to start at the beginning I think with my consultant.

    My hands are deformed and I don't know what damage has been done through all this time to the rest of my joints especially as when my arthroscopy was performed at the age of 22 my femur was already wearing away too fast.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    There is no cure for arthritis, the meds are designed only to slow its progress. We do have a choice: try and slow it and deal with all the nonsense that results, or just live with it. You've taken the second option so far, and it hasn't worked. Try the first - you might be pone of the lucky ones for whom meth works miracles (inasmuch as it reduces symptoms to a tolerable level with no other meds being required.) You won't know until you try. Take a list of the problems you face, when it's tolerable, when it it isn't, what might trigger a flare (if you have any idea, I'm still working on that one), tiredness levels, pain levels, etc etc etc. I wish you well, let us know how it goes. DD
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I hope you find the medication really helps you. Its difficult really to know what to do. Medication is much more effective even in the 10 years I have had R.A. Maybe your R.A wasnt very active at first but has got worse recently and you now need some help to control the pain and inflammation.
    I took a year to be diagnosed( due to moving house so no GP surgery would take me without an initial visit to the surgery but I could not get there due to the sudden,unexpected onset of pain) and I regret losing that year with my newborn son and a year of suffering and worry.
    The blood tests are to monitor for any damage so then they can take you off the offending medication before further damage, so its a good thing really.
    Good luck at your appointment and dont feel guilty as most of us hate taking these meds but prefer it to the pain.
    Elizabeth
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I don't have RA, just want to wish you Good Luck!!! :wink:
    Love Sue
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Yep, the meds have greatly improved in recent years so worth a bash.

    Initially I was diagnosed with RA and then rediagnosed with SLE (a form of Lupus) and PolyArthritis. If this was 15years ago the prognosis for me wouldn't have been good - I would be goosed and not long for this wonderful world however the meds have improved so much that I believe I just need to keep trying different meds and when I find the right one I shall be tickety-boo again.

    What I am trying to say, is that it is a different Arthritis World 17 years on so I am keeping my paws crossed for you that you find the right meds for you so that you can take this arthritis malarky in your stride and smile again. :lol:

    Keep us posted and sending positive thoughts.
    Carol
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Jen,

    Well done for taking the plunge and I am sure bloodymindedness has really helped as well. I used that for quite a few years with the oa. Drugs have moved forward and the understanding of ra etc has as well. I got pa a while back ( had it some time before anyone picked up on it) and was put on sulfa. It didn't make me depressed but it did make me ill so am now on mtx. So far so good.

    Will keep my fingers crossed and hope it goes well for you. Don't forget we do a half decent pocket dwelling so will come with you as well if you'd like... just don't go putting any beetroot in your pockets :lol::lol: Good luck and come and tell us how it goes. Cris x
  • tarasmygirl
    tarasmygirl Member Posts: 70
    edited 30. Nov -1, 00:00
    Good Luck for tomorrow Jenfa

    Taking a notebook with the details of your symptoms, when they are worse ( or easier ) , how far you can walk without having to stop , ask them what any medication is for - usually anti inflamatories and what pain relief you can take as well when it is needed. If they offer a steroid injection - go for it - I'm bad with needles but this was just like a scratch and I've definitely felt the benefit with pain and stiffness much improved.

    bigs hugs
    Cath
  • Rainbow77
    Rainbow77 Member Posts: 275
    edited 30. Nov -1, 00:00
    Hi Jenfa

    I have bumped up the thread - never ending Rea flare. On the end of it I did post a list of questions and advice on how to get the most out of your hospital appointment. I copied this from the net - and I have found it really useful in the past.

    Hope your appt goes well.

    Fayann xx
  • dachshund
    dachshund Member Posts: 8,480
    edited 30. Nov -1, 00:00
    Hi Jen.
    i have got oa but i wish you all the best for tomorrow.
    write down all the questions you want to ask
    as when you leave there you always remember a nother question.
    i hope you get something that will help you.
    joan xx
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Good luck for tomorrow Jenfa... you'll be fine I'm sure. :wink:

    lots of good suggestions already so just adding my best wishes to the mix and to say I'll jump in your pocket too...I've got peppermint creams left over (hidden) from yesterday and can make sure you don't go in to see the consultant with your clothes on inside out. :mrgreen::wink:

    love n ((((hugs)))) for tomorrow.

    Iris x
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    Hello Jenfa.
    How brave of you to have coped with RA for that long. What you did was you choice and how you feel now will make you wonder whether you made the right choice. All I can say is that I hope you deem enough information and help from today's appt.
    Hope you come back with some good news. It was the thought of having twisted hands and feet that made me persevere with the Methotrexate and various kinds of pain and nerve pain meds, but now it is all sorted and I think I am living my life to the best that I can.
    You say that some of the meds made you feel depressed. Are you not sure that it wasn't the ongoing pain of RA that made you that way? I'm sure it would have made me feel depressed

    Good luck and hope that you soon get relief from your pain.

    Joy
  • jenfa1
    jenfa1 Member Posts: 42
    edited 30. Nov -1, 00:00
    thank you all for your kind words, it is just to nice to not feel so alone in this. I know there are people a lot worse than me which is why I always find it hard taking the doctors time, but I shall have to put that aside.

    I read that other thread great points, thanks for bumping it, I can honestly say the ostrich has left the building and I have sat down and thought a bit more about what I want to say and written it down.

    I had a bone scan back in the late 1990s so am going to ask if it is worth following this up to see what deteriation there might have been. I have written down points about the meds why? when etc and must remember not to put my fingers in my ears and sing la la la when he talks about them!

    Depression and fatigue is def what I am feeling some days right now due to the pain, or lack of movement. Someone's comment earlier about coping made me stop and think, the reason I have managed for so long is prob cos I have stopped doing things that make it hurt and adapted a lot of my lifestyle, career etc and I am now at the point if I adapt any more I will end up in bed all day or watching daytime tv, which is impossible with an 8 year old to look after.

    Got my coat out with the big pockets, no beetroot I promise! and if you get peppermint creme crumbs you get the dry cleaning bill :0)

    Thank you all xx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Jenfa - sorry come late into this thread and I know you are at your appointment right at this moment! Thinking of you and really hoping that the appointment gives you a positive way forward. Love Tilly x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It depends whether the staff have turned up on time, tillytop! Seriously jenfa, I hope you are being seen and listened to - and listening in return! DD
  • jenfa1
    jenfa1 Member Posts: 42
    edited 30. Nov -1, 00:00
    Thanks Tilly

    Well I went, he was on time

    so we discussed what symptoms I have now, and we have decided that it is best to start really at the beginning again, as he wasn't the doctor that diagnosed me in the past, I am happy with this.

    He sent me for bloods (8 vials) to do a full rheumatology screen, hand xrays and chest xray. I am seeing a special physio for 4 sessions, think she will assess firstly and then see what she can do especially with my hips, she is a private physio. I have to ring back in 3 weeks for test results. The hand xrays didn't show damage but he will take them to xray meeting to be sure and chest was fine. He took my bp which was good and got me to lift my arms up and do things with my neck so he could examine me.

    His opinion at this point in time is that if the bloods aren't too high and the physio can manipulate my hips then to stay off meds right now. Still won't solve some of the other joint issues but am happy with how it went and feel that at least I am in the system and maybe I was right not to go on the meds all those years ago.

    Thanks again for your kind words, and I will still be on the forum finding out how everyone else is getting on, and learning, information is power after all and control.

    xxJen
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Hi jenfa

    Glad your appointment went well and that you've come away from it feeling so positive. :D

    sounds as though the rheummy was very thorough :wink: and it's great he listened to your history and is carrying out all the tests before launching into what he thinks!

    3 weeks isn't long to wait for the results...so we will all be holding our breath for the outcome. Did he give you a follow up out patient appointment?

    hope the physio sessions go well and help your hips. :!:

    glad too that you're going to 'stick around' the forum with us lot too. :mrgreen::lol:

    Irisx
  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    Oh Jen

    Well done you :)

    I am so glad it all went well and i think you have been very brave all along, dealing with it in your own way.

    I hope all the tests come back as you hope and that any treatment works for you really well.

    Love

    Toni xx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Jenfa - so glad you had such a good appointment. Nice to hear a positive hospital story for a change! As you say, at least you are now "in the system" and able to be followed up as necessary. Fingers crossed for the results - and good luck with the physio. Please do keep us posted.
    Love Tilly x
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi jenfa i know how hard it is to decide to take the meds its as if agreeing you will be disabled in your own mind but you are still the same person just have admited that the time has come for help sorry your hands are so bad if you had used meds before this they might not be so bad but nothing can change that you just need to find out what help is avalable. the exhaustion was the worst part for me sleeping before work at 1pm then again when came back at 5pm and unable to walk any where. not do not often nap in day and can walk miles might have to rest but at least get there with out feet swelling and being in bed for days i do hope they give you the help you need good luck just remember they are human same as you val
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    So glad the appointment went so well :D Great news about the X rays. As you say you are in the system now.
    Keep us up dated when you get the results back.

    Godd luck,

    Lv, Ix