I finally have my diagnosis

shandy4greenday
shandy4greenday Member Posts: 344
edited 24. Jan 2013, 14:38 in Living with Arthritis archive
Hello all I have just got back from my first Rhummy appointment and I have been diagnosed with Inflammatory arthritis,I don't know if this is a result or not as I am pleased to finally have my diagnosis but I think I'm just in shock of what type I have even though I think deep down I knew.I have had a steroid injection so that ruins my diet now and I have lost 2 and 1/2 pounds in the last 2 weeks,I wasn't quite expecting that.I have had x-rays on my hands,feet and chest,I have had 5 lots of blood taken and to top it all my meds are gonna be changed to Methotrexate and Hydroxychloroquine and I have to go back in 4 weeks time.They were really lovely and was gobsmacked I've been like this since end of September,Now what does my future hold am I able to work ? What work would I be able to do ? lots of unanswered questions,they have given me lots of information on my meds and stuff just still in shock really.

Comments

  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Of course it is a shock, that is a normal reaction, but at least you know why you have been feeling so rotten. Not easy I know but don’t panic yet about work changing etc. Give the medication and the steroid inject time to work. I am on the same combination of drugs and I would say pace yourself at first as they do take a good while to start working.
    The steroid is more or less standard practice to give you temporary relief while the meds are getting into your system. The x-rays and bloods are used as a base line for your future treatment. You will be well monitored while on these drugs and probably will have your bloods taken at least once a month to make sure everything is ok.
    Chin up flower, be kind to yourself and remember you are still the same person you have always been.
    Lots of hugs,
    I x
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Really pleased you have a diagnosis as its the unknown thats the worry. I know it will be a shock but at least you know so you can and will go through the stages of frustration, anger the acceptance and move on to right I've got it now what. Luckily plenty of help and support is on hand through all the lovely people on here who have all gone through this and dealt with it in their own unique way and I really admire all of them as its not easy how this thing can change so many things. You may not be able to do things you used to do in the manner you used to do them in but you will find another way of doing them(if that maked sense)

    Hugs for you

    Wendy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You have a label and the meds are being put in place. I was classed as an IA for years until my skin helped out with a bout of psoriasis but the change of label changed nothing - still the same meds etc.

    The meds are meant to bring your immune system under some form of control to stop the flares etc, it may take a littlw while to find the right combination of meds for you but it will happen in due course. On the minus side you're not sure about your future but then who is? On the plus side you know what's up, you are being taken seriously and things are moving in the right direction. I have to go to work now but I am very pleased that at long last you know what's what. Welcome to our ghastly gang! :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi shandy even though we want a diagnosis...when it comes we do sit and think...then the shock part kicks in...but like DD says you now have a plan in place, so hopefully you will get some relief very soon....please let us know how you get on with the meds xx
    Love
    Barbara
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    Thankyou everyone I need to get some work now to keep my mind off things and to try be a bit more active and not mope around feeling sorry for myself I have an interview with the jobcentre in 2 weeks to go to some course that will help me find something suitable for me so maybe that will help too I need to keep going and once the initial shock is over like you all say I should start to get some better pain relief I think ill get the meds in 4 weeks as they did all my bloods and xrays today and to check they are ok to be taking I will keep you posted how things go thankyou x
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    It's a result. It's always better to know what's what as only then can you start to combat it.

    I see no reason why a steroid jab should impact on your diet. The tablets do tend to increase the appetite but I've never found the jabs do. I hope that for you, as for me, it will help a lot.

    Don't get ahead of yourself and start worrying about work. One day at a time, remember.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Well that's a step forward. Better the devil you know so to speak. Sticky is right, one day at a time. All arthritis is different as the person it inhabits but I have inflammatory arthritis, work 4.5 days a week and exercise pretty well too...the meds, once you are on the combination that suits you, make quite a difference. I went from thinking the world had ended to embracing it and the opportunities it had once more. I hope you do too! Meth was my wonder drug, took its time to kick in but once it had it gave me back so much. Good luck and let us know how you go!
    Hey little fighter, things will get brighter
  • sugarbuttie
    sugarbuttie Member Posts: 225
    edited 30. Nov -1, 00:00
    Just a quick note from me....don't worry re steroid injection and diet. It is the oral steroids that cause increased appetite and weight gain. Steroid injections, in my experience, do not have this affect. I have had three and no appetite increase or associated weight gain.
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    Thankyou for the info on my injection I gave up smoking 3 years ago and have not been able to shift the weight so now with my health I thought it was important to lose it to help and was worried about it when I finally have a good diet set and eating much more healthy.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Well done on giving up smoking. I know how tough that is. I'm sure the determination that got you through that will also get you through the dieting. I really don't think the steroid jab(s) will interfere with that. I've never actually put weight on with steroids. They do increase the appetite though.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    Thankyou today is another day gonna try and be positive about it all I don't know if the jab has put a block on my naproxen but since my pains have been worse and it can't be the jab as that will start working soon,I'm getting another sick note till at least my next appointment at the hospital for now, once it gets controlled I will start working again hopefully,one other question I wondered is Inflammatory another word for Rhumatoid as hospital gave me information on Rhumatoid but said it was Inflammatory and has confused me as they seem the same.
  • vesoul73
    vesoul73 Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi shandy
    Sorry to hear you have inflammatory arthritis but it's good that you have a result and are now getting treatment. I was diagnosed in 2010 and have been on hydroxy since then. I have to say it has been like a miracle and I now feel so much better. It does take time to kick in. I also got a steroid injection the day I was diagnosed but unfortunately I didn't respond to it. Seemingly this can happen to some people.
    As for the term 'inflammatory': as I understand it, it's an umbrella name for the various auto-immune types of arthritis. RA is one such type. It could be that they are not yet sure exactly what type of auto-immune arthritis you have. I was told that the initial treatment for IA and RA is the same, and the important thing is that they can treat you. Hope this helps to clarify. All the best Liz
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    Thankyou I was advised I could keep taking my Naproxen but may find I wont need them as the steroid should help but if not can restart them so I will see how that goes and thankyou for clearing up the confusion between the two.
  • frogmorton
    frogmorton Member Posts: 29,881
    edited 30. Nov -1, 00:00
    Hi Shandy

    I am glad you do have a 'label' now, but very sorry that you have inflammatory arthritis.

    If you are lucky in time they may be able to narrow down the diagnosis to which one of them it actually is.

    Well done for knocking the cigs on the head - I did too and still miss them :wink:

    Take care

    love

    Toni xx
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    I am 99% sure it is NOT Psoriatic Arthritis so least we have narrowed it down to the last 2 hopefully and the tests I had done will show up what it is likely to be even though I'm pretty sure it is Rhumatoid Arthritis. I have started getting real bad back pain in the lower part of my back the last 2 nites in the evening I don't know if that is something you get with Rhumatoid or not but it's sods law as yesterday at my appointment I was asked if I get any back pain and I said I didn't because as of till last nite I hadn't but I have been in agony this evening which is now slowly becoming bearable after heat cream and pain killers. I really hope this Steroid kicks in soon as it seems my back is now becoming my new pain to get and I sympathise with everyone who gets this as I have never experienced pain like it before as I have never had back pain in my whole entire life before.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Glad you have got a diagnosis now, it is still a huge shock when you hear it although you have been waiting for it and wanting a diagnosis for so long.
    As for work, well that upto you, you need to think about how fatigued you get, could you do a full days work?, would doing a full days work completely burn you out and bring on a 'flare up'?, would doing your job cause pain and could I bear the pain though out the day? All these questions and maybe more you need to write down and think about, answer truthfully to yourself. Only then can you make a decision as much as it's hard to do. You need to think about you now and what's best for you.
    Hope you feel all right and remember we are all here for you if you need to talk. Take care.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ah, back pain. Mine comes and goes, I put it down to awkward walking (my knees and ankles are shot, toes not wonderful) and slumping on the sofa of an evening. It's the lower right hand side and it's awful at the moment. Back pain does occur without arthritis but whether it's a characteristic of it or not I don't know. I hope your back eases soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    Thankyou I have been given a month off work for now but not sure if the doc is prepared to give me more to be honest either as he never seems keen on giving me a sicknote he said he will review again in 4 weeks the day after my next hospital appointment he wants to know exactly why I need it all the time yet he is away of my condition.What also is not helping to be honest I have been on the housing list for a year and a half now still nothing I am currently sleeping on the sofa as I do not have a bedroom but they obviously feel it is not urgent enough.I might mebtion to hospital at my next appointment but I am concerned even if they offer me on medical grounds they will give me the worst area possible but I wouldn't be able to refuse if it's on medical grounds but I am worried about my health as I have 2 flight of stairs as I am in a town house at present which is private accomodation.
  • frogmorton
    frogmorton Member Posts: 29,881
    edited 30. Nov -1, 00:00
    HI Shandy

    I am so sorry about your back :( Backs are truly vile when they kick off.

    Try heat(wheatbag/hottie, painkillers and nsaids. Sitting as upright as poss supported by cushions. When lying down on side pillow between knees stops you twisting your spine.mmmm....

    If I think of anything else i will add to your thread.

    Ideally you ought to get housed as soon as poss - sofas are really not ideal are they for arthritic people :(

    love

    Toni xx
  • shandy4greenday
    shandy4greenday Member Posts: 344
    edited 30. Nov -1, 00:00
    Thankyou Toni so far this evening it seems much easier I really hope my steroid jab starts working soon too as I had it on Tuesday but have no signs of improvement as yet and think maybe my Naproxen helping a bit better today hence maybe why back bit better or just simply like most pains it just moves on to the next bodily part,I will see if there is anyway I could get rehoused sooner anything is worth a try I suppose.