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When do you give up?

Hello,
I’m an infrequent visitor to this Forum, but always find it interesting and useful. So am looking for some info / advice.
I’ve had an RA diagnosis for about a year. My mobility has gradually decreased and I can’t really walk anywhere now, can’t do normal household tasks, and feel like a 95 year old ( I am 58). This is no way to live, and although I am in awe of people who have lived like this for years, and remain positive, my choice would be different. So my question is how long does it take from diagnosis to get symptoms under control, to get the right drug cocktail etc? (on average) . If I thought this wasn’t going to improve then I would want to seriously consider if this quality of life is worth it. COVID 19 has put a brake on treatment (no steroid injections and no starting Methotrexate) but - that aside - am I looking at 1 year, 2 years? Interested to hear other people’s experience of how long from diagnosis to (successful) treatment? Thanks

Answers

  • Mike1Mike1 Posts: 637 ✭✭✭

    I understand how you feel as my depression has led me down dark roads before, however I have had OA for 20 years or so and am now 62. As everyone is different as is RA and OA, I will leave it to those with RA to talk about their treatment. One thing I would say though is think about someone/something that relies on you, silly as it may sound I have my cat who is the centre of my life and who relies on me and vice-versa. Rather than focusing on what you can no longer do focus on things that you can; I went from very fit ex-forces, running, weight lifting, martial arts, motorcycling to now being in a wheelchair with my driving licence taken away. I now make models, have an indoor and outdoor train layout and make bird tables and bird boxes, although I can only do these activities for 10-20 minutes at a time before I need to rest from the pain. It's also worth chatting things over with your GP. Hang in there things will sort themselves out.

  • Thanks so much for your reply Mike, I’m so pleased that you are able to keep going and find things to keep you occupied, even through such pain and changed circumstances.
    I’m fed up, obviously, but I don’t think I’m depressed, just anxious to get some control over the situation, in whatever way suits me best. I had a really helpful discussion with my GP just before diagnosis, and my consultant is also very good, so I am lucky in that respect.
    Thanks again for taking the time your reply and I hope the sun shines on your activities today!
  • stickywicketstickywicket Posts: 25,897

    This is a tough time in which to get a diagnosis especially when it’s not followed by treatment.

    You ask “how long does it take from diagnosis to get symptoms under control, to get the right drug cocktail etc? (on average)” That’s an impossible question. There is no average. For some, the first DMARD will work brilliantly almost immediately. Others will be adding and changing and fiddling about for months, even years. What I think is straightforward is that the sooner one begins treatment the better so, in your shoes, I’d be trying to find out if/when your rheumatologist will be starting appointments again. Your GP might be willing to put in a plea for you. But if your hospital is unable to deal with outpatients right now it’s probably just a matter of hanging on. In the circumstances, though, your GP could possibly prescribe oral steroids. Rheumatologists don’t always like this as (i)they mask the symptoms (ii)patients can feel so good on them they are reluctant to change to DMARDS and (iii)getting off them can be difficult. (And, taken long-term, they can do more harm than good.) But…..worth a try right now.

    Mike has given some useful tips. I think it was Nietzsche who wrote “He who has a 'why' to live can bear with almost any 'how'’. You say you are not depressed. May I say, only intending kindness, that I think you’re very depressed if you really feel “If I thought this wasn’t going to improve then I would want to seriously consider if this quality of life is worth it”. Quite understandably, depression often accompanies arthritis. You are striving to feel better mentally by dealing with your physical problems. Clearly this is the best way if it will work but sometimes it won't. Sometimes we have to accept the physical problems and not allow our mental state to be dictated by them. Sometimes a short course of anti-depressants might be needed for this.

    I was years before I got modern DMARDS as they weren’t on offer in the ‘60s. I was lucky in that I had periods of remission back then so, as teenagers do, I just cracked on with things until DMARDS made my life a whole lot better. And they did make it better.

    I would suggest you have a chat with your GP. It’ll probably be a phone chat right now but that’s OK. Explain your situation. Ask if (s)he knows what the outpatients situation is at your local hospital. (Try ringing them yourself.) Don’t try to mask your true feelings to your GP. Ask if there’s anything (s)he can do in the interim. And good luck.

    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • CrookeseyCrookesey Posts: 119
    edited 24. Jul 2020, 12:55

    You give up when they start to nail down your coffin lid. The worst thing about R/S & O/S is that they are both incurable, with no sign of ever being anything different. I hate the acceptance of the medical profession that all they can do for you is attempt to control your suffering, but we are where we are, smile in the face of adversity, the little **** doesn’t like it.

  • Thanks for your reply @stickywicket ( still not sure if I am doing this 'reply' thing right'!) .

    The info about oral steroids is really useful; I wasn't aware of that as an option. I am on Hydroxychloroquine ( 2 months in but no improvement yet) and I have a rheumatology appointment next week. As I said, both my GP and consultant are very good.

    I'm truly in awe of people who have lived with RA ( with much less medical intervention) for many years. I'm not depressed ( though I appreciate that it may seem that way if you don't know me) but I am keen to have some control over my quality of life, and if that falls below a certain level then I'm reluctant to just put up with it - no matter how many pets, grandchildren or friends 'need' me!

    My priority right now is to have an idea of when some improvement might happen. ( Let's stay positive and assume that it will!) I appreciate that everyone is different and there is no 'average', but it is always good to hear people's experiences, as it helps put things into context.

    Thanks again for taking the time to reply.

  • Hey @Crookesey - thanks for replying! Since getting diagnosed I've realised most of the general public know very little about arthritis, so definitely more research needed by the medical profession into finding a cure - not just treatment.

    Liking the idea of 😄 😀😃 in the face of adversity too!

  • Now then Creaking, you have used the ‘c’ word, settle down mods it’s for ‘cure’, I have offered myself up for the experimentation of new medications, but that went down like a lead balloon. Why should we settle for ‘incurable’, why are R/A & O/A viewed as boring conditions, why do I feel that I am suffering from a ‘second class’ disease?

  • LilymaryLilymary Posts: 274 ✭✭✭

    Hear hear Crookesey! Well said.

  • Mike1Mike1 Posts: 637 ✭✭✭

    I wrote off to sign up for a cannabis trial last year as they were calling for volunteers with chronic pain and didn't even get a response.

  • Airwave!Airwave! Posts: 2,344

    Curiously it’s not a lifet8me of arther that makes me down, it has given me a lot of positives, it’s not totally bad. I have a pension, my time is my own, I have so many th8ngs to do that make me happy including my children and grandchildren, love just keeps expanding and there is no void. I got past the ‘why me’ a long time ago and live for the experience of my life.

    I don’t expect to be cured or to live as long as others, but then if I don’t I won’t know about it!

    its a grin, honest!

  • stickywicketstickywicket Posts: 25,897

    Brilliant, Airwave, and also true.

    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Shame about the cannabis trial Mike1,you would have been a prime candidate,and I think it might have helped you.
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