35 year old struggling!

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RavenHairedPixie
RavenHairedPixie Member Posts: 36
edited 28. Nov 2023, 14:04 in Living with arthritis
Hi everyone! I got very suddenly diagnosed with rheumatoid arthritis in August have been struggling my way through getting seemingly worse! Currently taking methotrexate but I feel like it’s now not doing anything. Hoping to get some advice and help from you lovely people! My pains seem to constantly move and I will be fine for a few weeks... and then BAM! Anyway... hello all and looking forward to getting to know you x


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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello and welcome RavenHairedPixie to Versus Arthritis Community Forum

    I'm so sorry to read of you diagnosis of rheumatoid arthritis, you have come to the right place to get some helpful support and advice. As with any arthritis it can most difficult to find the correct balance of medication to support your pain. We have many regular service users with rheumatoid arthritis who are in a better position thsn me to offer some good helpful support and advice regarding medication and managing the illness.

    I have found you a link from our website that should be of help to you:-
    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    Can I also suggest that you give our helpline a call if needs be on 0800 520 0520. Hope this information is helpful for you.

    Enjoy the forum.

    John
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hi RHP and welcome from me too. I've had RA for so many years that I can hardly remember what it was like when I first started methotrexate. That was many years into RA anyway as it wasn't around back in the day. (Yup, I'm that old :lol: )

    I've always regarded 'moving pain' as being a good thing in that it's not settling in any one joint but my situation is very different from yours.

    Methotrexate can take up to 12 weeks to work properly. You've been on it for a little more than that but that did include the Christmas period when we all overdo things and then get payback.

    My own view would be that, if your regular blood results are OK then things will probably settle down if you can rest up a bit. However, don't persevere for too long. If in doubt ring your rheumatology helpline for advice. It could be that you need a higher dose of meth, or something else added. Many of us, myself included, are on two or even three DMARDS.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • RavenHairedPixie
    RavenHairedPixie Member Posts: 36
    edited 30. Nov -1, 00:00
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    I’m in a bit of a tricky position at the moment where I’ve been referred back to the NHS through the private clinic I started at... but I don’t have an appointment with them till 27th March!! So I now have no idea who to speak to about the pain and medication. I don’t have a helpline number for them yet. I don’t know if I can call anyone before my first appointment. I will try and stick it out for another week and hope the pain calms down again [emoji31]


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  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Oh dear! You could always try to enlist the help of your GP to see if they could get you an earlier appointment but GPs can only prescribe DMARDS as directed by a rheumatologist so (s)he couldn't alter your current dose or add in another DMARD.

    What dose are you on? Did the private rheumatologist prescribe it? Maybe you could go back to him / her.

    A GP could possibly prescribe steroids or anti-inflammatories to help you over the 'gap' but rheumatologists tend not to like that as they mask the symptoms and so make it hard to decide how well your current treatment is / isn't working.

    Who's doing your blood tests? What do they show?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am in my 23rd year of psoriatic arthritis (PsA) and have never found meth any good at pain relief, it 'merely' controls disease activity. Others find it different so who knows whch camp you will fall in to. You name the med I have probably tried it over the years but I soon learned to redefine the word 'work' when it came to this dross. I began with sulphasalazine back in February 2002 but have been on at least two medications for the PsA since the June of that year.

    I was always a candidate for an auto-immune inflammatory arthritis having been born with eczema and developing asthma (both auto-immune-inflammatory conditions). I am not surprised you have been bounced into the NHS from the private system, chronic conditions are of no interest due to the huge expense involved in treating them.

    I also have osteoarthritis whch my rheumatologist ignores and the GP can do nothing about the meds for the PsA as they do not deal with auto-immune arthritis. It might be worth contacting the rheumatology unit to which you have been referred and ask if they have a list of cancellation contacts you could go on; I saw my rheumatologist for the first time in years last summer, I rang my helpline due to a spot of bother and luckily, on that day, she had a cancellation.

    Pain is a feature of the disease and, for the majority, is constant. I cope with mine through minimum pain relief and maximum mental distraction. It's an aquired skill, however, that takes time to learn and one has to be willing to learn it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • RavenHairedPixie
    RavenHairedPixie Member Posts: 36
    edited 30. Nov -1, 00:00
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    Oh dear! You could always try to enlist the help of your GP to see if they could get you an earlier appointment but GPs can only prescribe DMARDS as directed by a rheumatologist so (s)he couldn't alter your current dose or add in another DMARD.

    What dose are you on? Did the private rheumatologist prescribe it? Maybe you could go back to him / her.

    A GP could possibly prescribe steroids or anti-inflammatories to help you over the 'gap' but rheumatologists tend not to like that as they mask the symptoms and so make it hard to decide how well your current treatment is / isn't working.

    Who's doing your blood tests? What do they show?

    Yeah I’m going to have a chat with my GP and see if there is anything they can do their end to push things along!

    I’m currently on 15mg of Metho and 7.5mg of steroids. Still trying to get into the swing of it all.
    My GP surgery are currently doing my blood tests. I’m just trying to stay positive but it’s hard some days isn’t it!


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  • RavenHairedPixie
    RavenHairedPixie Member Posts: 36
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    I am in my 23rd year of psoriatic arthritis (PsA) and have never found meth any good at pain relief, it 'merely' controls disease activity. Others find it different so who knows whch camp you will fall in to. You name the med I have probably tried it over the years but I soon learned to redefine the word 'work' when it came to this dross. I began with sulphasalazine back in February 2002 but have been on at least two medications for the PsA since the June of that year.

    I was always a candidate for an auto-immune inflammatory arthritis having been born with eczema and developing asthma (both auto-immune-inflammatory conditions). I am not surprised you have been bounced into the NHS from the private system, chronic conditions are of no interest due to the huge expense involved in treating them.

    I also have osteoarthritis whch my rheumatologist ignores and the GP can do nothing about the meds for the PsA as they do not deal with auto-immune arthritis. It might be worth contacting the rheumatology unit to which you have been referred and ask if they have a list of cancellation contacts you could go on; I saw my rheumatologist for the first time in years last summer, I rang my helpline due to a spot of bother and luckily, on that day, she had a cancellation.

    Pain is a feature of the disease and, for the majority, is constant. I cope with mine through minimum pain relief and maximum mental distraction. It's an aquired skill, however, that takes time to learn and one has to be willing to learn it. DD

    Thanks for the advice. I gave them a call and they have passed my details to someone to see if they can get me an earlier appointment


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  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I’m just trying to stay positive but it’s hard some days isn’t it!


    It is. And especially right now when it's all so new and you're stuck in the gap between private and NHS.

    One thing about arthritis is that it thrives on stress so try not to get too anxious about the wait or the pain or, indeed, anything. Much easier said than done, I know, but it's a fact that the more we concentrate on pain the more we feel it.

    Your meth dose is a 'middling' one. There's plenty of leeway for the rheumatologist to increase it. I'm currently on the same, along with hydroxychloroquine but I've been on as much as 22.5mgs at one time. Your GP can't give you pain relief while you're waiting if you want it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright