Mixed feelings

Just a bit of an update really. Since by massive moan last time I have now transferred hospitals and the Rheumatology team are completely different...they have been really fantastic and are so on top of things I never have to chase them. I've since put in a complaint about the previous consultant who left me not knowing what was going on and was generally useless (in my opinion!).

I've now started on Methotrexate and still taking the Hydroxychloroquine and weaning down the Prednisolone. Unfortunately my ALT came back as 149 this week!!!! So having to skip a dose of MTX but the nurse has called me several times to update and reassure me so although not great feel a lot happier than before.

I also had steroid injections in both knees and one wrist a week ago and although not fun at the time they have made a huuuuuuuuuge difference. Am planning on going back to work Wednesday after over a month off yaaay!

So mixed feelings really...concerned about my liver function tests and the MTX, anxious to get the medications sorted, pleased with the steroid injections and to see my knees again, excited to go back to wok (never thought I'd say that haha), relieved I now have confidence in the Rheumatology team, hopeful for a sunny day haha...maybe hoping for a sunny day is asking too much!

Hope everyone else is battling through.

xxx

9 Replies

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  • Hi tori_jane,

    Sooooo glad you are feeling much happier! You need to have faith in your medical team, just to give you reassurance and confidence. I recently moved GP practices and learned that my ENT consultant at the hospital had instructed my old GP to arrange an appointment with the rheumatologist about 2 years ago .... and nothing had happened. My new GP is young, dynamic and hopefully on the ball. Within two days of me seeing him I'd had two sets of blood tests done, a chest xray and two appointments arranged to see the ENT and Rheumy Consultants .... it makes me feel soooo much happier that I have found a doctor who actually gives a damn!!! Makes me feel as if my symptoms are real and not in my head!

    Good luck with work this week, take care xxx

  • Hi Tori,

    So glad its gone well, I'm just about to change from the Rheumy team I think have been great to a team nearer home and am a bit worried about it, but it will be easier travelling.

    And ye asking for Sun in Britain in July?......dont be daft ha ha

  • As a matter of interest ( am on MTX and in no pain at the mo) how often do you have the blood tests and see your consultants? I'm worried that as I have been so well over the last couple of years I might not be treating the RA with the respect it deserves! I have a blood test every three months or so, sometimes forgetting and hurriedly having a bloodtest just before hospital appointment! also I am seeing my consultant about every nine months or so. just wondering if I should be more diligent with the blood tests....my consultant is lovely but very harassed and always in a hurry and I don't have access to a Rheumy nurse at my hospital. actually, after reading some comments am thinking might be wise to change to another hospital!

    stay well peeps!

  • Hi Bevlin

    Like you I am well controlled and (touch wood) am relatively pain free. My Consultant sees me every 6 months and I have blood tests every 2 months so long as everything is stable, my GP always keeps an eye on the results and I also get a copy of them so I can see for myself that they are fine. As Allanah says it may be as well just to confirm with your GP that he is happy with evrything. Stay well yourself.

    Wendy xx

  • Hi Bevlin

    From what I know it sounds like they have your RA well controlled on your mt8 as you dont seem to have symptoms of pain or stiffness. Often the hospital will refer you to the GP for Blood tests to make sure your body is coping with the medicines if you are controlled so it might be a good idea to get in touch and check with the GP that they are happy for three monthly blood checks or if not.

    They might arrange a consultation with the GP to see how things are going. Often when u r well controlled u only need to check in with the hospital consultant every 9-12 month but assuming your GP is "keeping an eye" on things I would think. If you do get any worse or get any troubles you could ask your GP or just telephone the Rheumatology unit and ask for advice.

    I am not controlled so go to the hospital every week, but this is just to show you the difference, I cant wait to cut down the visits and be more controlled!!!!

    So glad it sounds like the treatment is working for you and lucky for you that you dont have to think about it too much and can live well with your RA!!

    love Axx

  • Hi Tori,

    So happy to hear you're feeling better! And that the injections worked for you too - hopefully the effects will last!

    It makes such a difference when you trust your rhuemy team - so am glad thats going well for you too!

    Enjoy work tomorrow (just make sure you dont overdo it!)

    Tracy x

  • HI Tori - I think you sound as if things are well in hand so well done for this. I hope things continue to improve for you and really glad you have now got a good rheumy team.

    Tilda x

  • Thank you everyone :-) You're right it makes such a difference having a team you have confidence in.

    Bevlin- I think it really depends on what stage you're at...at the moment I have weekly or fortnightly bloods and speak to someone in the team most weeks. The consultant is reviewing me every 3 months...however I'm very 'unstable' (in every sense of the word haha). I think if you've been stable on MTX for a long time then things are very different.

    Thanks Tracy...am def going to take it easy at work this week, although easier said than done!

    x

  • Thanks for all your comments, its funny because other than remembering to take my weekly MTX and twice weekly folic acid I can honestly say that I dont give the RA another thought....until I found this site and have found out so much that I was previously unaware of ! I've been sharing all these blogs with my mum who is 76 and has had RA since her thirties, she too has been brilliant since she has been on the MTX and is actually walking better than she was twenty years ago and still going for coastal walks and up unto a few months ago helping my brother in his cafe. If I can stay as well as her I will be happy! I think I will check in with my GP though, just to make sure all is under control.

    Tori...I feel for you with your fortnightly blood tests.....I hate them! I have very small veins and they always have trouble finding the vein (by which time I'm hyperventilating on the floor.....) so every three or four months suits me just fine!

    Hope you are all keeping well X

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