New to rheumatoid arthritis

Meli
Meli Member Posts: 11
edited 17. Aug 2021, 09:28 in Living with arthritis

Hi I'm 54 and have recently been diagnosed with rheumatoid arthritis. The future feels really scary to me at the moment. I'm not on any long term meds yet but will soon be taking hydroxychloraquine. I just wonder what type of life can I expect. Will I lead a relatively normal life with this disease. I feel really anxious at the moment . Can anyone shed any positivity on my situation as I'm finding the uncertainty hard to deal with ?

Thank you.

Comments

  • Mike
    Mike Member Posts: 11

    Hi

    my name is Mike and I’m 56 and have had RA since I was 33.I was initially on azathioprine which is not really used for RA today but it worked ok for me and in 2009 I went into remission and stopped all medication.All was good until 2018 when my mother died and it came back really severe and I was put on methotrexate and sulphazaline and it’s now under control

    I guess for me it’s been up and down and fortunately never too crippling and my life has been reasonable ok

    There are good treatments and good rheumatologist and you can be optimistic about the future

    I do get down sometimes but it’s so important to be positive and not feel sorry for yourself because you’ll only feel worse

    I wish you good luck and hope you get improvements with treatment

  • Meli
    Meli Member Posts: 11

    Hi Mike, thank you very much for your advice. I was beginning to wonder if anyone would answer my post, I've been looking eagerly to see if anything positive could be said about this condition. It's good to hear that you have experienced remission and were able to stop your medication and now that you are back on it, your condition is stable. I'm glad also to hear that your condition has not been too crippling and your life reasonably ok. I suppose it's something that takes time to get used to and that fear of the unknown can provoke lots of anxiety. It's all very encouraging, what you have said and I thank you very much. I will keep reading this post if I am feeling scared. Thank you for your good wishes and take care.

  • Wendolyn1
    Wendolyn1 Member Posts: 13

    Hi Meli,

    My name is Wendy, and I was diagnosed with RA about 7 years ago at the age of 52, where do the years go to?? Yes it was a shock when I was first diagnosed, even though I suppose it was a relief to finally know what I was suffering with. I didn't even read up on anything about it because I didn't really want to know to much. The internet can tell you too much sometimes, although sites such as this are a good way to feel part of a community, and amongst like minded people.

    I have always been a lively fun loving person who enjoyed Ceroc dancing and getting out and about socialising etc. This all slowed down quite a lot when I was first suffering with the various areas of pain through my body. Once the specialist put me on Methotrexate & Hydroxychloroquine though things started to improve, and over time my aches and pains started to diminish. This was a relief and I even went back to my dancing etc. Of course I would rather not be putting any chemicals into my body, but unfortunately this is what life has dealt me. The majority of the time now I lead a mostly pain free life with just the odd flare up.

    I hope you soon start to feel better, I'm sure you will once you start your meds. It is only natural to feel anxious and overwhelmed with everything in the beginning but it's good to share your feelings and hear other people's stories.

    Take care Meli, and look forward to a chat again.

    Big hugs, Wendy xx

  • Rina
    Rina Member Posts: 37

    Hi @Meli, it’s good to see you on the forum,

    I just wanted to post a positive post to you as I can understand how shocking it is to hear about a diagnosis of RA. I’ve had had RA since I was 19 and I’m now 64. It’s been a long time, with some pain, plenty of medication and quite a few surgeries and replacements over the years. However, I completed university; had a good career as a University Librarian; married; had two daughters; retired at 59 and have just returned from a 6 day trek along Hadrian’s Wall. Yes, there have been difficult times but looking back, doesn’t everybody have them in some way? My life has been lived with RA but it’s still been a great life and I’ve managed to do most things I’ve wanted to. I’ve had periods of remission and flare-ups but I’ve learned to go with the flow and remember that all things pass. I’ve been on a variety of drugs over the years and am currently on hydroxychloroquine which I’ve been on for over 10 years and which works for me.

    I can understand your fear of the unknown but I want to reassure you that your life will be fine ( who can say what normal is?!)

    All the very best, Rina xx

  • Meli
    Meli Member Posts: 11

    Aw Wendy and Rina, thank you both for your really positive posts. It's so good to talk with people who have had years of experience with this disease. When I was a child I can remember a little old lady with twisted fingers and who walked bent over . This was a great aunt of mine and as a small child I couldn't understand why she was like this but later, as I got older, was told she had RA. This is 45 years plus ago and thankfully I am aware that treatments are much more advanced now but this is the image I still have in my head of someone with advanced RA. I do have an history of anxiety, especially around medical issues and worry about taking drugs because of past experiences with side effects but hopefully if I can get onto the drug safely and see some results, it might help me to feel more confident. Thank you both for taking the time to answer my post, it has helped me tremendously and I hope you both continue to stay well . Take care. Meli xx

  • Lau
    Lau Member Posts: 3

    Hi Meli,

    I was grateful to see your post, as I to was diagnosed yesterday. I am 51. I thought I had carpel tunnel syndrome and more recently have had pain and flare ups until my orthopaedic GP saw it and immediately realised what it was. I feel the same. I guess I am coming to terms with what it may mean and all I have read suggests that it does not need to define us. I’ve joined this forum today as I think this is the best way of finding out from experts who live with this condition .Our experience will come from a place of understanding. For this I am grateful. I wish you well on your path and send you lots of positive thoughts. Take care Lau

  • Chris_R
    Chris_R Moderator Posts: 377
    edited 4. Sep 2021, 21:25

    Hi @Meli

    Welcome to the online community.I see you have been posting and contacted other members on the forum.

    It is very confusing when you have first been diagnosed with any form of Arthritis and scary aswell.

    Here are a few links that may help you

    Rheumatoid arthritis | Causes, symptoms, treatments (versusarthritis.org)

    Versus Arthritis | All of us pushing to defy arthritis

    Hope this information helps.Please keep in touch and tell us your journey as you go through your diagnosis we are here to help.

    All the best Christine

  • Poppyjane
    Poppyjane Moderator Posts: 194

    Welcome @Lau to the online community,

    It is good to see your very positive thoughts for another member in your very first post, it is much appreciated to receive these sorts of messages. You have recently been diagnosed with Rheumatoid Arthritis and hope to gain a greater understanding as you come to terms with its impact. I attach some links which I hope you will find helpful

    I am making the assumption that if you had thought your health problem was carpal tunnel that your hands and fingers are the main source of your concern and therefore information about them might help

    Many members have found the support of mindfulness exercises to be beneficial and from your positive comments above I feel that is a philosophy that you are in tune with.

    Thank you again for your support of @Meli .

    Do stay in touch with the community.

    Take Care

    Poppyjane

  • Lau
    Lau Member Posts: 3

    Thank you Poppyjane very much appreciated. I will certainly welcome & appreciate all advice available. Still working it through as is to be expected. Thank you for reaching out. It is very kind of you.

    Lau

  • Meli
    Meli Member Posts: 11

    Thanks to everyone who has responded to my post. It's a lovely place to come and talk to others when you are worried about anything, knowing that you are not on your own. I wish I could get the same support for my other medical condition, burning mouth syndrome which is causing me a lot of distress at the moment. Sending lots of love and best wishes to Lau and hope to read more of your posts at some point . Take care xx

  • kathleenT
    kathleenT Member Posts: 3,384

    Hello Lau,

    It’s difficult to say how you RA will affect you. I was diagnosed aged 36 in 1987 and for many years I was well enough to work, ride a bike and walk for miles. Now I’m 70 and also have OA and Osteopoosis. I can barely stand and need a Walker to get round. I hope the Hydroxy helps you. I take Leflunomide, MTX and Prednislone, along with Fentanyl patches and Oramorph. May I wish you well.

    KatleenT

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein