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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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  • Rainy64
    Rainy64

    Posted

    What a Rollercoaster im on!! Today was Grandma Day and wev had fun sat around playing mostly but tonight my Hubbys had to.help me get ready for bed. The pain in my hands is unbearable and both shoulders iv watched what iv eaten so sure nothings set me off. Im mow on 6 Gaberpentin.since Monday so why am I in this mess tonight?
    • carol303055
      carol303055 Rainy64

      Posted

      Rainy you must be so frustrated.  I truly hope you don’t have too long to wait for your appointments. Carol x
    • Rainy64
      Rainy64 carol303055

      Posted

      Awful long night, after a long stand under the shower this morning I feel more relaxed, hands are still.very tender but im feeling much better than last night, Im thinking now it would be from picking him up? If it is its just crazy how the pain is so severe. Sorry to worry you xx

      Everyone enjoy your day xx

    • carol303055
      carol303055 Rainy64

      Posted

      Hope you’ve had a better night. I can relate to what you say about picking little ones up but what do you do? They give such pleasure don’t they? I would sort of scoop them up! We had another born just yesterday so I may be going there again. Hope you continue to improve Sending love. Carol
    • Rainy64
      Rainy64 carol303055

      Posted

      Oh Carol he's the best medicine I could get and little Maci too I just wanted to be that fyn crazy Grandma dancing and running around with them and its heartbreaking not being able to. Going to work midweek doesn't help I'm sure as by the time Friday comes im already hurting and tired'

      Big Congratulations to you on your New Grandchild, it so over whelming the love you feel for them, enjoy every minute. Send lots of Love to you all xx

  • mary76396
    mary76396 Rainy64

    Posted

    Hi Rainy, for some reason I’ve not been getting notifications on posts from Patient but this post popped up today!. I’m glad your feeling a bit better and more positive now even though your pain is not really under control. When I started this journey into RA I felt very much like you, I had a demanding job, working mostly ten hour days and couldn’t understand why I was suddenly so exhausted, couldn’t move my arms, legs had ball and chains on them and my fingers felt the bones were loose. It took ages and many visits (and changes in Docs and Rheumatologist) before I finally got the diagnosis. Although they started me on Methotrexate and Hydroxycloraquine it wasn’t until they did bloods that still showed massive inflammation that they did a bone scan that showed up inflammation in my hands, arms,legs and feet that they took it seriously and prescribed a biologic injection. Since then I have been on three different biologics but have now found one that makes a huge difference. I see on a previous note that you are going for a scan and I hope for your sake that it is a bone scan (with contrast) so they can see how much inflammation you have and where it is so they can offer you a biologic as they are real game changers. I dont say that I dont get flares, I do! I am having one now but I ring Margaret my Rheumatologist and she tells me to take predisnolone for a few days and that usually gets me sorted. It seems to me that you don’t have the medical support you need, I’m in Australia (English by birth) and I know we do things a bit more casually than UK but it doesn’t sound as though they are taking your symptoms and state of mind seriously! There is so much more they could be offering you in the way of relief. Would you be able to change to a more caring Rheumatologist? For your sake I hope it’s possible.
    • Rainy64
      Rainy64 mary76396

      Posted

      Hello Mary, lovely to hear from you and even more so as you relate so much to what iv been and still going through. I do feel more positive now and so pleased about that as I was having some really dark thoughts. Im now just so anxious nothing will show in the scans . I dont seem to show high inflammation with my bloods even though sometimes when I go for them im in so much pain. I just dont know what il do if I dont get this sorted soon I just want my old self back. Iv been on 6 Gaberpentin.ince last Monday when they increased them but dont feel any more relief.

      Fingers crossed the appointment comes through soon.

      Take care xx

    • carol303055
      carol303055 Rainy64

      Posted

      Have you still not been offered any prednisolone, Rainy?  I wonder why if not. I know Gabapentin is used for nerve pain (I take it for sciatica)   Can you phone the scan department to see where you are? Hope you had a reasonable night xx
    • Rainy64
      Rainy64 carol303055

      Posted

      Hello Carol, no the only immediate change they did last week was increase my medication, im now on 6 Gaberpenti and 2 Hydroxychloraquin....excuse my spelling !

      This is my concern because they felt no swelling and my bloods are not showing high inflammation they look at me as though they dont believe me. So far today its the best iv felt for a long time, still some discomfort but bearable.

      Hope your having a good day xx

    • mary76396
      mary76396 Rainy64

      Posted

      Hi Rainy, I had a quick look at Gaberpentin and it’s usually prescribed for seizures or neuropathic pain. Is your Rheumatologist convinced your problems are RA? He (or she) doesn’t seem to be providing you with the normal meds for RA. The first defence is Methotrexate and they can offer that with Hydroxycloraquine (sorry if you’ve already gone through this on earlier notes) Methotrexate is something they use even when they are unsure of a diagnosis to stop any further damage. They can also offer predisolone, either short or long term, to reduce inflammation. In my experience with RA the one thing the docs do is try to reduce pain levels, my Rheumatologist is always asking me to use pain meds like Tramadol, which I won’t take, or Tapantadol which I keep in just in case and use occasionally. I also have wrist supports and compression gloves and they really help.  I really, really hope you get more help than you are receiving now. 
    • Rainy64
      Rainy64 mary76396

      Posted

      Hello Mary, They put me on Methotrexate first 4 years ago, first as tablet form.which I couldnt stop vomiting so they changed me to injections which was great for about 6 months then they couldnt control my liver readings so changed me to Leflunomide which caused blistering on my face and breathing problems, then everything went down hill where they put me on Hydroxychloriquin where iv never felt so poorly at the start. I wear gloves sometimes but the swelling gets so bad at times it makes it worse. I read everyone's post and do wonder if the docs and rhumy are really listening to me, its been a week now n still no appointment come through sad xx

    • mary76396
      mary76396 Rainy64

      Posted

      Rainy I’m so sorry for you, Methotrexate is a dreadful drug but it works for most. I’ve been off it now for nearly a year for the same reason as you, my liver tests were sky high. ,Hydroxycloraquine didn’t work for me either but I was offered weekly biologic injections which really help. I would keep my fingers crossed for you but they don’t do that anymore 🤞but the sentiment is the same. I hope you find relief soon.

    • mary76396
      mary76396 Rainy64

      Posted

      Hi Rainy, strange how things turn around! I’ve been having a flare recently and had a Skype appt with my Rheumatologist a week ago and my inflammation has gone up again and as my liver has improved she has put me back on Methotrexate but only 7.5ml injections! That’s now two injections a week, might as well be a pin cushion! Hope it relieves things though.
    • diane77471
      diane77471 mary76396

      Posted

      Hi Mary,Carol and Rainy, Seems we are all in the grandmom phase of our life. I probably responded in the earlier forum but wanted to chime in to let you all know I've been following the discussions and they help me so much to know I'm not alone. I'm in remission right now and believe it's the Humira that is responsible, thank God. My first flare occurred in November of last year and didn't let up until March. Worst pain and fatigue I've ever experienced. I took prednisone 3x for 10 days each and it was a wonderful drug but each time I stopped, I became crippled again. 2 months on humira and I became myself again with more energy then I had before my flare. I share this because I want you all to know there are others like us reading this and we care. God bless you all. Diane

    • carol303055
      carol303055 diane77471

      Posted

      I agree it’s good to ‘talk.’  I went to the respiratory specialist centre at Wythenshawe this week.  It’s looking like I have rheumatoid lung disease. Great. Well it is what it is. I think there are a couple of treatment options. I’ll be reviewed later in the year. Love to you all. Carol
    • diane77471
      diane77471 carol303055

      Posted

      Oh Carol, I'm so sorry. Not sure what RA lung disease is but hope and pray they can treat it.

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