New here - rheumatoid arthritis

Mandyw
Mandyw Member Posts: 5

Hello I just joined and wanted to introduce myself and ask for some advice

ive recently been diagnosed with rheumatoid arthritis and I have a massive flare at the moment which has been going on actually for months. Some days I am ok, the next day I’m not. Pain on soles of feet when walking and inflammation in toes. Knee pain, hands wrists, shoulders and neck, they all come and go but over the last two weeks I’ve had at least one pain every single day.

Ive been seen by rheumatology and they started me on hydroxychloroquine 400mg daily and so far I’ve been on it a week with no effect. To help combat pain and help me sleep I’ve also been taking Codydramol.

I literally feel like this is ruining my life. I’m not overweight, never smoked, rarely drink alcohol, eat a pretty healthy diet and actually recently since the flare up I’ve cut sugar from my diet completely. Everytime I think about it I end up in tears and I even told my partner if he leaves me I would understand. He has been a godsend helping me in and out of the bath, and with simple day to day tasks like making a cup of tea in the morning.

Im 34 and I cannot believe this is happening to me. I know I have to be patient with the medication but when can I expect to see some relief? I also take daily high strength curcumin and black pepper capsules, omega 3, b12, vitamin d supplements which I’ve been on for a while. Recently also started making smoothies with organic moringa powder and organic wild blueberry powder.

have tried also magnesium salt baths. Saunas … I’m literally trying everything possible but nothing seems to help. I’m at my wits end I just want my life back :’(

Comments

  • Hi @Mandyw

    Welcome to the online community. I'm sorry to hear that you're feeling so low with your recent diagnosis. I completely sympathise, I'm also 34 and facing the same challenges. You sound like you have a supportive partner on your side which is fantastic, use this. He is willing to help you so let him. Unfortunately it's a waiting game and a lot of trial and error for some people while a suitable medication is found, but keep I touch with your rheumatologist and keep a record of symptoms, medication, flares etc. for yourself.

    Here are some links that may be of use to you:

    You're doing great, just hang in there and keep using the community.

    Take care,

    Sarah

  • Mandyw
    Mandyw Member Posts: 5

    Thank you Sarah for your reply so promptly. I hope that you’re also managing to cope and I would be grateful to keep in touch with you, it’s always good to chat to someone your age group going through the same as you so you don’t feel so alone.

  • frogmorton
    frogmorton Member Posts: 27,650

    Oh @Mandyw I am sorry you are struggling so much at this time of year too.

    This is very very early days for you medication-wise it can take many weeks for the drugs to help. When I was first diagnosed they started me on hydroxy too and I also had a depot steroid injection in my rear! That really helped and gave me the kick start I needed until the hydroxy did what it did or the flare subsided not sure which.

    In time the Rheumatologist added other medications to my arsenal and life is ok for me now.

    Well I remember how you might be feeling now. I thought my life was over and wallowed a lot (probably annoyed all my friends and family), but once things got more under control life has been good. Not the same of course a few modifications but I am still on my feet and having a great life.

    I see you are doing lots to try to help yourself, but are you doing your 'range of movement' exercises? Might be called strengthening exercises.


    Sending you much love and ((()))

  • Mandyw
    Mandyw Member Posts: 5

    Hi Toni,

    Thank you for your reply and I am glad to hear that you are leading a great life after your struggles. I hope to be in that position sooner rather than later, I think remaining positive (or at least trying to) is also a big deal.

    I do yoga and love walking, I used to go to the gym and do weights, but I have had to stop that for the time being. But certainly I am still stretching and moving around as much as I can, I will have a look at the link you sent.

    Thank you for being so helpful, you have no idea how much it helps to hear I am not the only one struggling - I really appreciate it.

    Merry Christmas

    Mandy xxxx

  • Arthuritis
    Arthuritis Member Posts: 279

    @Mandyw Do you know what your blood test results were, as they indicate how the Rheumy will medicate you.

    The key tests are & indicating my numbers

    ACCP (off the charts)

    RF (154 very high)

    CRP (low)

    ESR (low)

    The first two are a bit like primers, they indicate how bad it can get, the latter the current activity, which varies.

    My rheumy offered a steroid injection at the start but I declined it.

    NHS & global policy on RA now is to hit it hard, and fast ie as aggressively as you can tolerate, so in addition he offered methotrexate (mtx) with the Hydroxy (HCQ) as a combo. HCQ is comparatively mild, MTX is more potent but i declined it initially, but after researching it got on board. I am now on 400mg HCQ daily AND 15mgMTX.

    With the HCQ alone my blood tests showed I was getting worse.

    My pains started with feet, due to excessive walking, (alternative during lockdown to gym) but then after each vaccine jab a new symptom ie locked jaw, stiff hands and later other joints after flu vax.

    I was unmedicated at the time, and unaware that unmanaged RA can flare up with vaccines (vaccines boost your immunity, which was the last thing my early RA needed). Now I am on immune suppression, so this year I’ve gone from fit as a fiddle gym bunny, to having aggressive RA & joint & ligament damage.

    Frogmorton & StickyWicket are two very experienced people and have seen a lot, and can give you great tips on how to cope.

    I would suggest you urgently contact your rheumy again, to take your blood tests again to see if your RA has got worse, and get you on a combination therapy if possible. HCQ by itself is too mild if you, like me, have an aggressive form. The prognosis is much better if the new NHS policy is followed, -hit it aggressively, hard and quickly. GPs are meant to refer you to a hosp with 3 days of symptom onset, but most are not upto speed on RA, and still make assumptions on your appearance, not realising RA has no visible symptoms until its progressed a lot, and they should run a blood test

    Please post how you get on.

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