Newly diagnosed

Hi everyone, I was only diagnosed with rheumatoid arthritis last week and I am so scared. The dr has prescribed methotrexate and hydroxychloroquine and I am worried about the side effects. The dr also told me to rest when I have a flare up ( which I have at present ) but I care for my husband who has duel dementia so I am finding things hard both physically and mentally .

11 Replies

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  • Hi Diddy and welcome x

    Life throws things at us together don't you find? Bit of a devil when your working so hard to help your hubby.

    But have a good read of the NRAS site as there's tons of information on RA and how to cope with it.

    Also your methotrexate hoefully will kick on soon although it can take a few months. If it doesn't help there are loads of others drugs to try. But it's good you have started the treatment as it will prevent your joints from getting any damage in the future which is a good thing !

    There's loads of friendly helpful people on here so any questions I'm sure they will help.

    Yes try to rest up during flares and have a long chat with your gp about good pain control ( they can be a great support)

    Hope you feel better very soon and sending soft internet hugs xxxx

  • Hiya Diddydriver & welcome from me too. It is hard at first, the diagnosis & then being informed you have to take regular meds to try to halt more damage & to try to stop your body attacking itself but believe me you'll get used to things. This is the worst time, unmedicated & the shock of diagnosis. The meds we need are not aspirin but then aspirin wouldn't do what MTX & HCQ will do for you & try to think that your Rheumy wouldn't give them to you if you didn't need them.

    I've had both & still taking MTX which I look upon as my antidote because to those who need it it's not a bad drug. At the doses we take there are fewer side effects or less severe at least! There's no guarantee you'll have all if any of the side effects so try to think positively, it really helps. If you do have any they are generally easily helped & if not there are other DMARDs your Rheumy can prescribe. Most do take a little while to become effective but hopefully your Rheumy will suggest a steroid injection or a short course of oral steroids to ease your inflammation & in turn your pain making things more bearable waiting for your needs to take effect.

    I think it might help you to help yourself if you speak to your GP about some help looking after your husband to take some of the pressure off you, he should be able to point you in the right direction. Not entirely, I don't mean that, I would think you wouldn't want that either, just in the mornings for an hour maybe. You'll be having morning stiffness which you may find prohibitive when helping your h & why I think maybe mornings would be helpful.

    Rest is important with RD, overdo things & you risk flaring which isn't good. You'll learn to listen to your body & rest up before things reach a head.

    If you need any questions answering or just some supply we're here. We've all been just where you are now so understand as nobody else can so ask away, we're a wealth of information between us, all at different stages & control. If you're tempted to look online do try to keep to reputable sites, you've possibly been searching as you're concerned about side effects of your meds or maybe you've read the patient information leaflets? Remember the manufacturers have to list everything found when the meds were put through rigorous trials before being licenced for use for use in RD but honestly, you'll be grateful for them, they're not bad for those who need them.

    Take care & remember you're not alone with this. :)

  • Please do give the NRAS helpline a call on 0800 2987650 as they can offer a huge amount of information and support. It does sound like your consultant has taken effective action. Hitting RA hard with DMARDs (Disease Modifying Anti Rheumatic Drugs) is the most effective course of action and if you follow the therapy as prescribed the chances of reaching remission are increased considerably. NRAS has a really helpful booklet for newly diagnosed which is freely available to get your copy visit nras.org.uk or call 0845 458 3969.

    NRAS here to help every step of the way.

  • Thankyou to those who replied so quickly, now I know that I am not alone I feel a little better. How do you all cope with the constant weariness?? After three months of MTX will it get better or does it never stop!!!!

  • Aw that's nice. MTX will be working but the disease itself can cause fatigue so maybe you're not well controlled yet, it wouldn't be unusual, the magic 12 weeks is a guideline & we all react differently. Don't fight it, if you're feeling tired then rest. It's a steep learning curve but you'll soon understand when you've done too much. It'll get easier, promise!

  • Thankyou . You are so kind and understanding.

  • I've experienced it so those newly diagnosed have my empathy. I didn't have the benefit of joining in on a forum when first diagnosed so you've one up on me! I try to be an optimist, it helps!

  • Meditate regularly to help cope with fatigue.

    This will help you both mentally and physically.

  • I would suggest that you explore the options for support in your caring role. Sadly your husband's condition is likely to deteriorate making it more difficult for you to cope. If you can get help before you are in a crisis it will be so much better for you.

    Fatigue is a major factor for many with RA. You need to be prepared to manage your energy reserves. The fatigue can be very debilitating and have a major affect on your life. I previously had chronic fatigue in my 30s and know what it can do to you. Luckily my fatigue from RA from hasn't been quite so bad but I have had to make allowances when affected.

  • Scottishlad Thankyou so much for your suggestion. I will certainly explore any help I can get. The future is a scary thought for me. As I am not getting any younger (67 ) I am finding it really hard at present. There is an awful lot to take in just now.

  • Hi, and welcome! I can't add much more than what's already been eloquently said, but I do want to send you gentle hugs. I too am fairly new to all of this and I know it can be scary. And to be a caregiver on top of all of this must be horrendous. I was the sole caregiver for my mother before she passed of Parkinson's w/dementia. I don't know how I would do it now with this illness. But you have found a place that understands and can be so helpful!

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