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Urgh - MTX / doctors / wine

Lewis2000Lewis2000 Posts: 5
edited 1. Sep 2017, 14:12 in Say Hello Archive
Hello all,

Diagnosed with with PsA not so long ago and currently in week 7 of my MTX - so v early stages but it has been a grim few months with various inflammations, pain, steroid injections etc, and a cocktail of drugs to get through the day.

In addition to MTX (and FA) weekly, I am on steroid tablets daily (a decline dose each week), dicloflex (typically twice a day) and co-dydramol as and when required, with a stomach-lining tablet each morning to complete the set.

It was a bit of a shock to hear the diagnosis, even if not a complete surprise given the googling of the various painful symptoms I had narrowed down what it was likely to be.

A few main issues that I would welcome views / comments on:

1) MTX - I'd say limited impact so far but have another six weeks to go before the drug will be properly reviewed. Should I be hopeful that it will actually start to mark a difference and 1) I'll feel a bit better and 2) the BT results will reflect this (or vice versa).

2) Pretty much as stressful as the condition has been the very regular trips to the hospital for the appointments and blood tests. This has not been helped by a consultant completely lacking in empathy and consistently late - not just in terms of appointment terms but even rocking up to the first appointment of the day 20-40 mins day on multiple occasions. I've started a new role recently and it is tricky balancing 1-2 hours at the hospital for what should be a 15 min appointment with demands of the new job. What options do I have re the consultant? Can I swap them? My files notes are also a complete mess (according to another consultant I saw when usual one was running stupidly late).

3) Alcohol - I have been given mixed advice from medical professions on what is allowed to be drunk forever me whilst on MTX - nothing, less than 5 units or the usual weekly allowance for an adult. I'd love to know what the right answer is before I tip my booze cupboard down the sink.

Thanks so much in advance. It's a brave new world I find myself in, if not a particularly enjoyable one.

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hi Lewis2000
    Welcome to the forum.We are all friendly here and we chat to all.Sorry you are having problems at the moment,you can contact the helpline if you want to talk on0808 800 4050,you will be made most welcomed.I have OA so know a bit of what you are going through as regards to Arthritis pain.
    Choose a forum and start to chat you will soon get replies.
    All the best Christine :D
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi Lewis. I'm sorry to hear that you qualify for our motley crew :wink: but I hope that things will improve for you once the meds kick in properly. That's a fairly normal lot that you're on. The steroids are usually given to help a bit until the DMARDS start to work. The rest is about par for the course.

    In answer to your questions:

    1. Let's hope it will kick in soon though sometimes it can take a while. Also, sometimes another DMARD is added to help it along. I take methotrexate and hydroxychloroqune and, in combination, they work well for me. Occasionally people have to try different ones though. And 'working' doesn't necessarily equal painfree. It means the bloods look good and the disease is under control. You might still need the pain meds.

    2. Arthritis thrives on stress so do try to avoid it. I honestly don't know if one can change a consultant as easily as one can change a GP but I would always allow quite a lot more time than you might feel necessary for a consultation as bloods, physio, x-rays can often complicate things.

    3. I think most people in UK (Be glad you're not in USA where they're tougher :wink: ) are told not to drink until the methotrexate is proving well-tolerated. This is because the liver has to deal with it and chucking alcohol into the mix can upset the applecart. Once all is OK and on an even keel, I think it's OK to drink within the normal guidelines. Personally, I like a glass of wine with my evening meal and at least one more if friends are around. Having said that I seem to have inherited an excellent liver as my bloods rarely rise into double figures. Do be assiduous with the blood tests. They'll pick up any potential problems long before you notice anything wrong.

    And, should you still decide to tip your booze cupboard down the sink, I'd be delighted if you'd tip it my way instead sdrink
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • RogRog Posts: 24
    edited 30. Nov -1, 00:00
    Lewis2000 wrote:
    Hello all,

    Diagnosed with with PsA not so long ago and currently in week 7 of my MTX - so v early stages but it has been a grim few months with various inflammations, pain, steroid injections etc, and a cocktail of drugs to get through the day.

    In addition to MTX (and FA) weekly, I am on steroid tablets daily (a decline dose each week), dicloflex (typically twice a day) and co-dydramol as and when required, with a stomach-lining tablet each morning to complete the set.

    It was a bit of a shock to hear the diagnosis, even if not a complete surprise given the googling of the various painful symptoms I had narrowed down what it was likely to be.

    A few main issues that I would welcome views / comments on:

    1) MTX - I'd say limited impact so far but have another six weeks to go before the drug will be properly reviewed. Should I be hopeful that it will actually start to mark a difference and 1) I'll feel a bit better and 2) the BT results will reflect this (or vice versa).

    2) Pretty much as stressful as the condition has been the very regular trips to the hospital for the appointments and blood tests. This has not been helped by a consultant completely lacking in empathy and consistently late - not just in terms of appointment terms but even rocking up to the first appointment of the day 20-40 mins day on multiple occasions. I've started a new role recently and it is tricky balancing 1-2 hours at the hospital for what should be a 15 min appointment with demands of the new job. What options do I have re the consultant? Can I swap them? My files notes are also a complete mess (according to another consultant I saw when usual one was running stupidly late).

    3) Alcohol - I have been given mixed advice from medical professions on what is allowed to be drunk forever me whilst on MTX - nothing, less than 5 units or the usual weekly allowance for an adult. I'd love to know what the right answer is before I tip my booze cupboard down the sink.

    Thanks so much in advance. It's a brave new world I find myself in, if not a particularly enjoyable one.

    Welcome Lewis

    i too have been diagnosed with PsA but only for just over a week now, i dont know about you but i have found it very hard to actually take in and have just taken my 2nd dose of Methotrexate (which i found to have made me very nauseous)

    My hardest thing is trying to explain to my place of work that I have good days and bad days with my condition, currently by shoulder is starting to play up alongside my long standing ankle issue (pardon the pun) and have asked to be moved about a bit in work to suit, its annoying having to explain to every single manager tho who runs a shift on why i cant do it on a particular day.

    Anyway enough of me waffling on. I too am new to the forum so hope to talk soon.

    Take care and welcome again.
  • Lewis2000Lewis2000 Posts: 5
    edited 30. Nov -1, 00:00
    Thank you, both. That's greatly appreciated. Onwards and upwards, and have a great weekend in the meantime.
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