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Diagnosed 6 weeks ago struggling to come to terms with it and the medication . How did others cope with diagnosis

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  • Posted

    Give it some time is the first thing I would say. It's been a year and a half for me and there are days I still struggle with this diagnosis. The meds are also trial and error and what works for some doesn't work for all. I'm on my 3rd one now, and first biologic. I was told it was the magic bullet I needed to put me into remission. I've been on it for 5 months and not in remission for sure. The only thing that makes me feel good again is prednisone and of course we all know we can't be on that one long term. All I can say is take care of yourself and try to get your rest, but stay as active as you can and be sure to exercise. We need to keep our muscles strong to help our ailing joints. You will get a lot of advise from "experts" who think they know it all about our condition but don't have it themselves. You can still live a great life with RA, so don't let it get you down too much!

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  • Posted

    I've had it for 5 years and was also in shock when I got my diagnosis.  First year is always the toughest because they all start you on methotrexate, hydroxycholoquine and sulfasalazine which did nothing for me.  Finally got on remacade which put me in to remission thank goodness.  You have to exercise even though it hurts, you have to keep using those muscles and get out of bed and keep going.  I did not suffer from the fatigue until lately and boy can that get you down too and attitude is important.  Your friends and family will have a hard time understanding what you are going through.  They can't even understand the pain you are going through but know that we do!

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  • Posted

    Hi Sez, I am sorry to see your post and hsve enormous empathy.  I too took a long time to come to terms with the diagnosis, and think I was frankly in "denial" for a long time.  the initial drugs of methotrexate etc dudnt work for me, though they do for lots of people.  I struggled therefore not only with the diagnosis but also pain and risk of defirmity.   My advice would be to look to your diet, cut out sugar if possible and as others have said exercuse, even if just a slow walk outdoors, get out and into nature if possible as much as you can.  You will gradually come to terms, fight for what you need medically, and control this.  It is a constant acceptance and things change, be kind to yourself and be patient you will improve and hopefully come to terms with the diagnosis....you are never alone, we are all here to support you. 

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  • Posted

    Denial, frustration, anger. It took a while to get my head around it, I was diagnosed in 2012. It didn't help there being so much 'hit and miss' about the diagnosis and the treatment. That said, I have a good quality of life and love looking after my grandchildren. I have a 2 year old every Monday and Friday. Just saying that to illustrate it's not the beginning of the end as I once thought. I agree also that it is difficult for others to understand. You will no doubt hear people say they have some arthritis, meaning O.A. and that can be frustrating too. I would advise if and when you have flare ups (or other symptoms) let your Rheumy know so they can advise. It took me a while to catch on to that and I suffered  for longer. Keep your chin up, you will get there. Carol x

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  • Posted

    Hi I looked at it this way people get diseases illnesses all the time what can you do so to speak, I was diagnosed about 15 years ago could hardly walk or use my hands now 15 years later still here and nowhere as bad as at the beginning due to medication , and to add to my problems I have tinnitus in both ears for the last 23 years, and IBS, as they what can't be cured must be endured, I reckon you'll come to terms with it, good luck with your treatment.

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  • Posted

    It was like a grief process, shock, anger, could I have done something different- loss.

    That was my response in March 2014 aged62

    a friend said' you ll have to go down a gear' 

    a physio said ' it may take up to a year for them to sort out meds' 

    they were both right.

    it so depends how severely you have it as everyone is different. Quite a few people respond well to methotrexate and have a great improvement fairly soon. If that s not the case it can take a year, but now I am stable through having a biologic and have been in remission for over a year.

    so does that mean I m just as I was before- no. I still have to pace myself and rest more than I used to. I can't push my body into overdrive. I can't deal with stressful situations so easily.

    However er I have great quality of life. I go dancing, walking, swimming- play with grand children , can do housework , shopping etc- but for a shorter burst of time.

    i did not think that would be the case when I was first ill. So I m incredibly grateful to the rheumatology team .

    my advice would be to get informed - make sure you tell consultant if the treatment is not working sufficiently. Read up about your treatment. Expect that they will keep on trying things until there is improvement. A surprising number of famous people do their jobs with RA. Make sure to get family and friend support round you. Listen to your body s energy level and pace yourself. Let others help you, even if you re used to being the capable one. Medication has come a long way so you won't have the kind of joint damage you see with elderly folk who ve had RA all their lives.

    I do hope you find supportive people around you- both medically and in your everyday life. 

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  • Posted

    Keep positive. It will get better. I was diagnosed in 2007. I had a rocky road with different meds for a while. Etanercept (Embrel) was my saviour. I have been in remission for years now. That said, I have a 'flare up' at the moment. My coping mechanism was making RA my 'naughty' friend, who needs a bit if discipline now and again. So I'm just whipping it's you know what as we speak. Good luck

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  • Posted

    I just felt relief that someone was listening to me when I was actually diagosed by a different hospital back in 2009. Had spent 3 years in agony seeing various different Dr's who were giving me steroid injections but telling me I didn't have RA. I lost my job in the NHS as I couldn't function most of the time.

    I am now being managed by an amazing team of Dr's and Specialist nurses who are always contactable if I have a problem.

    Been on all the various meds and these have been changed when they stop being effective. Currently taking hydroxychloroquine and injections of methotrexate and roactemra.

    I was referred to the mental health team by the Rheumatologist when I was first diagnosed as he didn't think I was managing my pain well and that also helped with my depression.

    I hope your disease is under control soon and you can carry on with your life.

    There is a free course available about Management of a long term Condition. I was a tutor for a few years. You could maybe google it- it is for all sufferers of a long term condition and runs for a few weeks. It is well worth going on.

    Hope this helps.

    Best wishes Elspeth xxx

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  • Posted

    Hi Sez66. How are you getting on a couple of months down the line?
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    • Posted

      Doing well now settled on medications on the better side of side effects so pleased with current progress. Thanks for taking the time to ask
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  • Posted

    Hello. I wanted to share something with you. I have 2 daughter's 15 and 10. My oldest was diagnosed with JIA at age 12 and struggled to understand her condition. Lots of medications and lots of crying days. It wasn't until my youngest was diagnosed with the same and my oldest finally came through the understanding. She had to grow up a little faster because ahe had to show her baby sister that life can throw you waves but only love and strength can help you through it all. Her words not mine. They are stronger together. It's still hard some days but having someone to talk with really helps especially when the person knows what your going through. Find support find that one who can listen and comfort you and you will be stronger. I wish you well and I know you can do it!

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