Rheumatoid Arthritis

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Hello Again, i have recently been diagnoised eith RA at 19. I am just wondering how others cope with their pain? I have recently been put on Methotrexate but it doesnt seem to be doing alot for me. I have pain in both shoulders, wrists/hands and fingers. I get these lumps on my knuckles all the time and they hurt. Just wondering where others get their pain and how they cope with work/ house work? I was doing hair dressing and found my shoulds would give way and id drop alot of things cause of pain. Does anyone else have this problem?

Thankyou

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  • Posted

    How long hv U been on MTX? It takes s while for the med to work . I'm on my it for 3 months . Pain Is bearable and I will still feel pain here and there. I guess we have to live with it for the rest of our lives. I hope there is a cure some day... Have rest when you have to .. Be kind to yourself . Do tk k

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  • Posted

    Are you on enough MTX to be effective.

    I am on 35mg by injection once a week, but took a long time of taking smaller doses and then finding why did it not seem to be working.

    I was on tablets, and even at 35mg the specialist could not understand why i was getting no result in inflamtion levels, she then tested me to see how much was in my blood stream for the days following, very low, nowhere near the 35mg there was supossed to be, it passed right though my stomach and bowel without being absorbed, so injection it was, which I didn't like the idea very much, she shamed me into being an adult and said what about the 8 year old's with diabetes who give themselves injections a number of times a day, at that point I stopped whinging.

    I think they have to start you on small doses as for some people it can be very nasty and cause liver problems, that could be dangerous if you are one of those unlucky few.

     

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  • Posted

    I have had RA since I was 20. As far as work and housework, you will likely find you gradually adapt your lifestyle.  For example, I changed taps in the house, bought really sharp knives, have electric tin opener, test drove loads of cars to find the lightest steering, changed to automatic car, etc etc.  As I sit here thinking about it, over the 28 years I have had RA, I have gradually changed quite a bit of stuff!  Not overnight though...more of a process. This is hard; how can I make it easier?  I was a piano teacher and now I can barely play.  I went to University and trained as a primary school teacher.  In reality though, everything has its difficulties.  I struggle to tie the children's shoelaces, open their bottles, put staples in the wall, get staples out of the wall etc etc!!!  Best recent buy?  A Gtec vacuum cleaner...they are so light!!!  I can vacuum again!  Another tip; give up on ironing and choose clothes that don't need it! Other things I find myself doing is, rather than carry a pile of heavy books, I do 3 trips with a smaller amounts.  Don't do things you know will cause pain; think of another way, even if it takes longer.  Although I don't talk about my RA at work, people know.  My hands are very deformed so it's difficult not to notice.  Many colleagues see me carrying stuff and they just come along and take it out of my hands and take it to my room without saying anything.  I let them do it, and try to repay them in other ways. I wish you all the best; I'm sure you'll find ways of managing what you have to do.  Oh, just thought, can you see an occupational therapist?  They are so full of helpful tips.  All the best!

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  • Posted

    Hi

    It does take a while to find then meds that work for each person as they try one, maybe increase dose, maybe add another and so on. But be hope ful you ll eventually have a lot less pain and a lot more back to normal living.

    you do have think round how you do things. I never iron now( too hard on wrists) it means changing habits in small ways and accepting help whenever possible.

     

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  • Posted

    Hi ebonyrose you say that you have just started mtx but you don't say what else your

    taking if it's just mtx then I'm not surprised your feeling so lousy you should

    also be taking a load of pain relief as well is,paracetmol along with tramodol you should

    also be on steroids while the mtx gets into your system to start doing its job

    properly prednisolone is the one normally the least amount is about 7.50m a day you

    Won't be on those forever when mtx starts to work your dr will gradually wean

    you off them also amitriptyline to take at night helps you to relax and get you

    to sleep you should also be on anti inflammatories prescribed by your dr not

    over the counter ones,once you have got your meds sorted and the mtx is

    Doing what it's supposed to do you will then have a pretty good idea of what

    to take and when to take it it's a long road to go on but I promise you will get

    there you will be so in tune with your body you will no exactly what to take and

    when,now as for trying to work as well I'm afraid along with the pain from the

    R.A you will have to cope with side effects from meds that's not even taking into

    extreme tiredness that R.A gives you,you must get Dr to sign you off till you

    have got some control over your illness you won't be able to cope otherwise

    It may be that you won't be able to return to the job that you do or any for that

    matter so get advice on your benefits go to C.A.B tell them what is happening

    Tell how it effects your day to day life they will sort you out R.A is life changing

    but there is as iv said light at the end of the tunnel but first look after yourself

    Sign off get meds sorted out the rest will take care of its self

    Take care let me no how you get on

    Regards Ann

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  • Posted

    Hi there

    Sorry to hear you are feeling so bad and at such a young age. Yes it does take a while to kick in but are you on other meds too? Its usual to be on a few meds. My pain flares fiercely sometimes and other times its not so bad but its always there. Its a hard task finding exactly what will work for you as we all need different drugs, strengths etc. But being diagnosed is the biggest hurdle. You are now on the right track and will get help. As for housework....I don't do much and it's starting to show! I hope once I get the right medication I will get back to being more houseproud! Fatique is my big problem. My feet are on fire at the moment too. I hope you have a good rheumy nurse as they can be very helpful. I don't get it in my shoulders but hands, wrists, knees and feet mostly. Its a random disease and everyone gets it differently. Stay strong and keep us informed on your progress. Your age may well make you able to deal with it more quickly I hope.

    Sherry

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  • Posted

    Hi. I was diagnosed at 16, I'm now 61. I had exactly the same as you. I was given Feldene, Butazolodin Alka (until they banned it!) and 32 soluble disprin per day. So I have no stomach! Mine quietened down in my late 20's. I spent 6 months in Manchester Hospital in my 20's under Professor Kellgren, now deceased, but you can google. You do really adapt. I will not let my wife help me unless it is really needed. That keeps me going and the little stupid things (bottle tops, tins etc) when I open them makes me feel good.

    I live in France now and am on Methotrexate injections weekly for 8 months, but they are not working, so I am going on a Bio-therapy injection soon.

    I hope you feel better soon...Life is good, and I always believe there is someone far worse off than me! Take care. Dave

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  • Posted

    Yep, mine started out in bothwrists and forearms as well as thumb and finger of the left hand.  I started on prednisone then went to MTX and sulfasalazine and then onto hydroxychloroquine, none worked for me, not all meds work for everyone.   Unfortunately, I had to wait for six months before I qualified for biologics, which I've just started, in that time the RA spread to my elbows, upper arms, shoulders, neck, lungs and now toes.   Now I just have to hope cimzia will work before this RA puts me in a wheelchair.   Doctors know zip about this disease and treatment is simply a guessing game.   Some are lucky and find something that works early, others battle on forever it seems.

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