Just a quick Hello

Morning all I'm a bit nervous doing this as I'm a lad of 30 and just really coming to terms that I have Rheumatoid Arthritis. If you just bear with me I shall explain my story.

Back in October 2012 I was 28 and playing football on a Sunday as I always have done, when during the game I was unable to sprint. Thinking nothing of this I came off but was ok walking and just carried on life as normal, but within a few weeks my jaw locked up my hands, legs and feet then started to swell so I went to A&E and was given anti clotting injections, which stung big time. Then I was given a appointment with a neurologist and sent for a scan for MS etc... after having the scan and weeks of chasing I was given no follow up appointment and my GP told me to wait till after Christmas and come back to him if I felt the same which made me quite angry as all my life I have played football, golf done cycling, running and swimming but now this, but it didn't matter how many times I told the so called professionals that something wasn't right (especially in my hip) and also going from a healthy 13 stone down to 11 stone in 3 months because I couldn't open my jaw, I was told to wait so I reluctantly did. After having a painful Christmas and even not being able to pick up my 5 month old son I went back to A&E after a spell of dragging myself to bed as my legs gave up for the night and more swelling, but again I was told to go home as they couldn't explain. Then as i was about to leave i pleaded with the doctor for an x-ray on my hip, which then finally brought up that I had a problem as I had worn away my cartilage in the hip joint.

I was then put on crutches and referred to a specialist in fractures etc.. After months of appointments and a biopsy on my hip I was finally referred to a Rheumatologist.

Then at last after a year of struggle I finally had a change. After being given a steroid injection then being prescribed methotrexate and folic acid after 4 weeks I started noticing I was more mobile and was able to do a few more things, which then I started eating again which was nice and I probably indulged a bit to much last Christmas 2013 but it was worth it, I started putting weight back on.

So 2014 started really well symptoms going and back playing golf and socialising with friends after not seeing any of them for about 6 months, and also having 2 young children and a wife being able to get involved with them again as a family.

Then coming to the end of this year I was very sick all of a sudden and couldn't even hold down water so had a blood test to show my Liver enzyme was sky high so had to stop taking my medication also was put on a pill to lower my Uric acid in my Kidneys.

So a bit of a set back but back on the pills again but managing my pain no problem apart from this dodgy hip which I now have a constant limp, which I feel would have been ok if diagnosed earlier but there you go. So hopefully get my liver and kidney levels right and all should be ok fingers crossed. But looks to be a alcohol free crimbo.

Sorry to make it sound dramatic but thought coming on to these blogs might help, and thanks for your time to everyone that has read this hope to be off help and get some advice of you people on here now that I have accepted it.

8 Replies

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  • Hi azze84,

    Welcome to the community, I hope you will find it supportive when you need to talk to others with your disease. So sorry to hear that you had such a battle to get diagnosed.

    Our website is nras.org.uk and our Helpline is available Mon-Fri 9.30-5.30 if you want to ask any questions or find out more about anything. Our information booklets may also be helpful -http://www.nras.org.uk/publications/category/publication

    I hope you are able to continue your treatment and just get in touch if we can be of any help to you in the future.

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Coordinator & HU Admin

  • Hi and welcome azze84. Sorry you have had such a lousy time trying to get diagnosed - and that now - just as treatment was going so well you've had to stop it because of your liver. I think many of can identify with your story in some way or other whatever age or stage or gender. As Ruth says the helpline can also be a really good place to let off a bit of steam and talk to someone who really knows about this disease/ syndrome/ RA.

    Twitchy

  • Well you can't say you haven't been through the mill to arrive at an official diagnosis can you azze84?! Well, you found us & welcome now that you have. What occurred to me as I read your history is what a shame nobody picked up from the initial symptoms they all could be related. Had they run a full bloods it would have been caught early, my h had multiple symptoms abroad which were scratchy heady so they did full bloods & was on treatment for 2 separate conditions within a week.

    However, that doesn't help you but hopefully being back on MTX will get you back on the right track. Have you not been offered injections rather than tablets yet? You may find them more convenient, I certainly do. I take it they monitor you closely now with monthly, or more frequent, bloods? MTX has been my saviour, with my other meds tagging along helping of course but it's the med that holds everything else together.

    I hope your Rheumy considers your hip when treating you. At your age a dodgy hip is only going to hamper you so I would hope there's an op in the offing in the not too distant future.

    It sounds as though you have a lovely family. I'm sure you'll be able to enjoy Christmas with it without booze but that's easy for me to say, I don't like the stuff, or rather it doesn't like me! But think you're being sensible having already had liver problems, we're advised to temper alcohol when on MTX & the 0% alcohol lagers etc are close to the real thing nowadays. My Consultant preferred no alcohol & used to look at me over his glasses when I said I don't touch it, but by liver said otherwise. A reduction in my dose confirmed it wasn't me causing an issue with my liver but the MTX! All's been fine since excepting for a rise in WBC count recently, body fighting an infection I wasn't aware I had & dropping to 15mg & changing to a different NSAID was all it took for my bloods to stay pretty level.

    I hope you find the site useful & you receive more replies welcoming you. By the way, we have a few male members, so you'll have company!

  • Many Thanks for you kind replies.

    Yes twitchytoes that is exactly what I was looking for a place to have a chat about it. My wife is great but I don't want her to be hearing me go on now and again lol its not fair on her but she will say otherwise.

    Thanks for your reply nomoreheels. I must admit my doctor got me to try taking the mxt another way spread out over 2 days in a 24hr period as i felt a bit sick on them and this seems to of helped big time.

    Yes I am on monthly blood checks now which I am now committed to as a busy life can sometimes put these things back until you realise they are more serious when first thought. I will probably opt for a hip replacement eventually as I'm getting on ok at the moment and applying for a mortgage so I don't want to be off work just yet, and as for the booze I must admit I don't miss it and that can only be a good thing, but it is surprising even the little amount I drink before the doctors look at you as if you are out every night. And that is the weird thing I have found, we may feel absolutely fine in ourselves but something always shows up in blood tests???

    Thanks Again and look forward to getting to know you all.

  • Hi and welcome, sounds like a lousy time you have been having, I can fully relate to you having been in the Army my whole adult life I was devestated when diagnosed 2 years ago. My life was upside down and to a degree still is as I am still finding the right drugs for me having had problems with my liver and bloids also. This forum is great and you will find friendly RD sufferers ready to listen and ready to help, it's a lifeline for us all. I hope you get sorted soon and find the right drugs for you, it can be a long journey, but we are all in it together, take care bud :)

  • Hey,

    Thanks for sharing your story. I'm 36 and newly diagnosed and it's so reassuring to hear that other young (ish!) people have RA and that despite the ups and downs, treatment is helping.

    S

  • Welcome to the site, there's plenty of really good people on here to help answer yours and everyone's questions because we all chip in as and when we can, you have DEFINATELY come to the right place.

    Take care

    Philip

  • Hi azze84

    Welcome to our little club. Hope you have found it useful. I certainly do. I was 26 when diagnosed and didn't know what rheumatoid arthritis was really, it's a steep learning curve. The biggest thing I've learned is to pace myself , to listen to my body and if it's not right get in touch with the hospital.

    Take care KiKi

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