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Really struggling with RA and its treatments...

Posted , 14 users are following.

Rainy64
Rainy64

Hello im new to this but really struggling, iv always worked hard and people use to say slow down and my answer was 'im working hard now because one day il have Grandma duties and that's when I slow dow' On my 50th birthday in August I started with pains in my right hand through t h e months and endless doctor visits and hospital appointments by December I was unable to dress myself without pain or walk with support, they started me on Methotrexate tablets, which caused nausea so was changed to injections weekly, thus caused high liver readings so I was then changed to Leflunomide tablets and after a few weeks seemed to be picking up but then I had continual breathlessness and blistering to my face so again this treatment didnt suit. Iv now been on Hydroxyquin 4 weeks and symptoms seem to be getting worse, its so painful to shower, dress just the basic things we do daily. Im now 53 and have 2 gorgeous grandchildren, with the eldest being 9 months who I try to help with ....like I always said when Grandma duties come along il stop, unfortunately I cant get going, it breaks my heart to not be able enjoy the time with him, I still try to work a little but once home I head to my room and just dont want to see anyone, its so hard to think positive when your in such pain 24/7

I know through reading other stories im not the only one dealing with this but hope to find some light on how to get through it and enjoy making fun memories with my Grandchildren

Xxx

1 like, 79 replies

79 Replies

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  • MR._BELLA
    MR._BELLA Rainy64

    Posted

    Has any of you medical team mentioned you may have PMR. You need Prednisone.
  • carol303055
    carol303055 Rainy64

    Posted

    Oh Rainy, I so feel for you.  I was so looking forward to spending time, looking after my grandchildren, helping my daughters when I started with this about 6 years ago. I’ve been through various treatments, not able to dress myself and in pain I couldn’t believe. At the moment I’m pretty well controlled though s ciatica has complicated things and walking any distance is a problem but overall not too bad.  It may be time for your Rheumy to consider Biologics?  They’ve made a huge difference to me. I’ve had to stop methotrexate due to lung side effects and I’ve been on prednisolone which I’m trying to reduce. Make sure you let your Rheumy know you’re symptoms are not controlled. Hang on in there. You deserve some quality of life. Grandchildren are such a joy aren’t they? Mine kept me going when I felt like giving up.  I’m not sure about slowing down sometimes I’m busier than ever but it’s easy to forget I’ve been where you are. It will get better. Phone your Rheumy.  Be assertive. Take someone with you? Good luck. We do understand how difficult this is. Let us know how you get on. Carol x
  • EileenH
    EileenH Rainy64

    Posted

    Is your doctor sure this really is RA? It sounds possible this could be polymyalgia rheumatica. 
    • Rainy64
      Rainy64 EileenH

      Posted

      Hello Eileen yes theyv not said any different. Im going to mention what youv suggested on my next visit, Thank you
  • Tinabird
    Tinabird Rainy64

    Posted

    Dear Rainy

       I feel for you!! Stay positive... please speak to your Rheumy about TNF blockers that work on inflammation.. Enbrel is the one I am on and it has helped a lot. I also live a clean life eating fish, lots of greens, low low sugar intake, low alcohol, and take Tumeric and black pepper tabs that also help inflammation., no dairy... You have to work it from all sides and it will slowly start to improve. You can get a better quality of life back and enjoy your grandkids!! I would also agree to make sure you are properly diagnosed.  RA is mostly joint related. Other types of arthritis (Pscoratic, Spondolyarthritis), attack tendons attached to joints... hard to diagnose a lot of these... as my Doctor says it's like playing "Whack a mole"  just take note of your symptoms and what bring the flares on and share all of this with your Doctor. 

    I hope this helps.  

    • Rainy64
      Rainy64 Tinabird

      Posted

      Hello Tinabird, its so hard to stay positive when your in so much pain 24/7.

      Its very interesting what youv said about dairy products as I had yoghurt to eat but surely it wouldnt have affected me that bad? Im going to monitor more what I eat to see if this will help any.

      I cant say what part of me hurts, it would be easier to say what dosnt, its been such a struggle today again, im just so tearful, I just cant lift myself xx

  • Gloria814
    Gloria814 Rainy64

    Posted

      Hang in there!   It will get better but it takes so long to find the right medication.  Sounds to me like you qualify for biologic drugs which can work wonders.  And they should consider some prednisone til it gets all sorted out and you are not in such awful pain

      Be persistent--let your nurse or doctor now that you are not getting relief from current med and something else needs to be tried

       I also take the tumeric 2x day and am careful (most of the time!) with what I eat.  You could try and keep a food diary and see if some foods make you feel worse but first you need to get better pain control.   You will get to the point that you can enjoy those little grandkids---they are the magic bullet of joy and hope : ).   I have a 3 yr old 11 mo old and a 3 month old--my 45 yr old dau finally!!  decided she wanted to a child and  now a 3 mo old She gave birth to a beautiful baby girl 'Hazel'   

        Wishing you all the best,

        Gloria

    • Rainy64
      Rainy64 Gloria814

      Posted

      Thank you Gloria for your kind words, im going to mention everything youv said on my next visit next month snd also call my nurse in the next couple of days, it seems to soon at the minute, I just start crying whenever I start talking about it. I really do Thank you for what youv said xxxx
  • Gloria814
    Gloria814 Rainy64

    Posted

      don't wait too long to call the nurse---they need to know how you are doing.   I live in the US but i am thinking you are in another country and some sutff is handled a bit differently in other countries .   I have been on 4 different medicines--2 biologics but I had side effects.  I also hve crohns disease so a bit of a double whammy but I keep fighting as  you must    Stay strong!

     

  • carol303055
    carol303055 Rainy64

    Posted

    Hi, it’s Carol again.  I’ve read and agree with all the other comments and I hope you’ve been in touch with your Rheumy team. They can’t help you if they don’t know. If it takes a few days before they can see you or even get back to you  there’s no reason why your GP can’t consider some steroids which would help you in the short term.  You’re not in a good place at the moment but it will get better.  Sending hugs. Carol x
  • diane77471
    diane77471 Rainy64

    Posted

    Hi Rainy, I was diagnosed in Dec and started immidately on methatrexate. Symptoms got so bad I couldn't walk or take a cap off a pen. I was depressed and had very little energy and pain was unbearable. Easier to name what didn't hurt. I thought I'd never get better and had occasional thoughts of suicide. I called nurse frequently and went on prednisone 3x which did help short term. I recovered almost completely after 1 month of humira. I sometimes cry with gratitude. And my energy level is off the charts. Praise God and the medical community.

  • Rainy64
    Rainy64

    Posted

    Thank you so much everyone, I really do appreciate your words of support. Today was my Grandma day and once again I had to call in my daughter for support The pain is so bad today I cant lift my arms and it even feels its in my throat and jar my hands are so swollen.they feel their going to burst. Iv phoned my nurse so just waiting for a call back I know its nothing iv eaten as iv only had a piece of toast because I feel so nausea, I feel I keep nodding off I hate not being able to control my own body, the pain is just too bad you say hang in there but if its to be like this I just cant bear to be here xx
    • carol303055
      carol303055 Rainy64

      Posted

      While you’re waiting for the nurse to get back to make an emergency appointment with your GP.  I think you might really benefit from some steroids, and quickly. It’s breaking my heart to hear you’re in so much pain and so low.  Are you in the UK?  All GPS will have some emergency appointments.  Where I live there is also a system where we can see a doctor at the weekend as part of our practice.  However you do it please see someone ASAP you can’t carry on like this xx 
    • Rainy64
      Rainy64 carol303055

      Posted

      Yes Carol im in the UK iv had the worst night so far my hand are still so painful ans swollen iv tried twice so far to get up and showered but just cant even lift my arms to start, were supposed to be meeting my sisters and their husbands for a 40s weekend so you would think this would also give me a push but the pains so bad and trying to cry quietly so my husband dosnt hear is a task in my self I just dont want to be here I cant do this
    • mary76396
      mary76396 Rainy64

      Posted

      hi Rainy, I can understand how you are feeling, I suspect we have all been where you are now. I used to hate not being able to lift my arms to use a hairdryer, I’ve forgotten how many times I’ve thought the power steering was broken or tyres down in my car because I had trouble turning the wheel or that I was wearing a ball and chain on my legs because fatigue made them so heavy, and the pain in hands and feet made me miserable but there is meds that can help, I’ve been through so many from Methotrexate (now stopped because it damaged my liver) predisnolone (I take it short term if I get a flare) and a biologic ( TNF blocker) injection each week. This is my third biologic, they target only parts of the immune system and it’s a gamble to find which one helps each individual but when it’s found it makes a big difference. Ask if a biologic would help for you as they can make a huge difference. They are usually given along with Methotrexate but I’m on Orencia alone and it’s holding me up so far. My Rheumatologist also has given me a Tapantadol pain relief but I havent neeed to take it for ages.

      there are lots of things to help you so please don’t despair but push for relief you will be surprised how easily you will cope with your grandchildren when you get some energy back. I can lift my 4 year old grandchild easier now than I could when he was a baby! Good luck.

    • carol303055
      carol303055 mary76396

      Posted

      I agree and can relate to all you and Rainy are saying. When I once, a couple of years ago, got downstairs (I don’t know how) got myself propped in a chair somehow and had my husband wedge a drink in my hands because I couldn’t get them to the side table, I thought I didn’t want to live like this.   And I meant it. My grandchildren were and still are my world  and I couldn’t pick them up or anything. Such a different picture now.  I sincerely hope Rainy has got some response and some relief from her professionals xx 
    • Rainy64
      Rainy64

      Posted

      Hello Carol xxxxx

      Not been on here a while been to distracted with this Rollercoaster ride 😦

      Well today I got to meet up with my consultant and hes finally put me on a course of steroids to build me up as iv lost weight and not trong senough to try the next treatment. So im now on Steroids, Hydrochloriquine.......stil dont know how to spell it! and 6 Gaberpentin, pains controllable through my body , except my hands, if I could just cut them off at the wrists id feel better. I hope your doing well, much luv xxxc

    • Gloria814
      Gloria814 Rainy64

      Posted

      do try the cold therapy hand gels and the steroids should help for now and you should gain weight. Have been thinking of you this week and wondering how you are doing. Take care

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