I've been a little naughty.

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dreamdaisy
dreamdaisy Member Posts: 31,520
edited 18. Aug 2016, 11:59 in Living with Arthritis archive
And I have but I feel so much better within myself (which I think is a good thing). For reasons not worth explaining (mainly because I don't know what they are) I haven't taken my sulphasalazine for around a month or maybe longer - I truly cannot remember and neither do I care. (For any newbies reading this I am twenty years in with this nonsense and have been around the medical block a few times as I will demonstrate).

Sulpha was my first med (cue Gloria Gaynor but I wasn't petrified :wink: ) and although it did nothing for the arthritis I carried on; it was a constant throughout my various experiments with tablet meth, lefulunomide, cyclosporine, infliximab, Enbrel, injected meth and humira. I am used to taking daily medication, I genuinely thought it was helping to keep my skin clear of psoriasis but, to be honest, that has not been much of an issue for me (unlike DebbieT and others). I also have a friend with PsA who is very well controlled with just six sulph tablets per day: that was never my lot but one lives in hope. :| Yup. :lol:

So here I am, a few weeks without and my skin is no worse, the joints hurt because that's what they do because but - BUT - I feel better within myself which is so refreshing. I have carried on with the injected humira and meth but I like having a little more energy, a little more get-up-and-go and, even better, the tinnitus has decreased. Currently I'm in a better place but know far better than to think it will last. I'm going to rheumatology the week after next, and will 'fess up because they need to know that I'm not playing by their rules but hey, they live with theory. I don't. DD
Have you got the despatches? No, I always walk like this. Eddie Braben

Comments

  • nearlybionic
    nearlybionic Member Posts: 1,899
    edited 30. Nov -1, 00:00
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    Hi
    You mentioned there that you are 20 years in, and although you are going to see your Rheumy and they have some knowledge of arthritis etc, you are the expert patient and you know what works and doesn`t work for you. I am pleased that you are feeling more energised and better in yourself. You say you know this may not last but enjoy it whilst it does I say! If your pain is no worse than normal and your skin isn`t either then I would see how it goes and if things take a change for the worse then decide what you want to do next.
    Enjoy the improvements, however small!!
    NB
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    You know you better than anyone,I'm right behind you DD.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
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    HI DD
    It's your body and you know it better than they do.
    Unless you are doing something life threatening {and I'm sure you are not :roll: } You go for it. Make the most of your life until it decides to "NOT LAST " then take it from there .

    That's the thing about homeopathy. They treat the person not the disease.

    We know everyone is different and different meds can affect different people different ways etc.
    Dihydrocodeine.......If I take that I end up on the ceiling {even tramadol affects me} but other people can happily take dihydrocodeine.

    I did use homeopathy many years ago...before this arthritis kicked in. About 30 years ago? It worked for me.....wish I hadn't stopped it and then got on this merry go round of tablets etc

    Go for it

    Love
    Hileena
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    As we both know, some people's health deteriorates because they are too scared of pills to take them or, at least, to take enough of them. Other people's health deteriorates because, in their quest for their former life or 'painfree', they end up shovelling ever-increasing meds and strengths of meds into themselves. And, as we both know, you fall into neither of these categories.

    I am a notorious 'pill dropper'. Over about 16 years, I have got my meth down from 22.5mgs weekly to my current 12.5mgs. It doesn't always work. Last time I tried to come down from 15mgs I had to abandon the project but I think I can now claim success for my latest attempt. I'm currently waging war on the bedtime cocos. A few months ago I had to concede defeat but this time, mostly, I'm winning.

    I do always consult with my docs before embarking on these projects and I think you are wise to fess up to your rheumatologist. My guess is you'll be told to 'Carry On Non-Sulphing' unless things go pear-shaped. They could. As we know, these meds can take all too long to get into our systems so, presumably, the same to get out. I do hope it works though.
    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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    Thank you for your support y'all and for taking the time to reply. I have a good understanding of my very poor-quality body, and I listen to it on a very regular basis because if I don't I end with more trouble than required. I accept that I have this disease (why bother wasting emotional energy and time in denying its presence?) and I accept the increasing limitations it imposes, adapting my approach to activity as best I can. I have mentioned on here before that when I have to stop the triple therapy thanks to being properly ill and needing anti-biotics I feel better within myself - when you think of what these things do to suppress disease activity it's no wonder that I may feel a little suppressed as well. It is hard living with a condition that cannot be cured, that refuses to leave me alone, that craves attention like a hyperactive toddler whilst behaving like a sulky adolescent. The meds are important, they have essential role to play but maybe, just maybe, we become creatures of medical habit as we work our way through the day's intake or remember that it's a humira / meth injection day (or in my case forget. The kitchen calendar is a disappointing sight with its Hs and Ms, rhs and lhs (right hand side, left ditto)).

    I am not leaping out of bed in the mornings and emulating Julie Andrews as I twirl my way through the house to make a cuppa (I doooo feel aliiive without the sullllllfa . . . ) but I am doing more housework (with equally bad grace as before but with a little more oomph), pottering round the garden with my little bucket bin, weed puller and secateurs and (much to my surprise) a smidge of pleasure and generally getting a little ahead with things instead of catching up.

    Before we knew what was going on with me health-wise Mr DD spent a deal of his hard-earned money in sending me to a homeopathist and I took lots of her little white pills reasoning that they probably wouldn't do me any harm. Indeed they didn't, in fact they did nothing at all. I thought that she might have had some idea that I was dealing with an auto-immune inflammatory condition given the size of my left knee and history of you-know-what but no, no concept whatsoever. I know the senior Royals are keen fans but they are blessed with remarkable genes on the health front, the best prophylactic there is. For me it's up there with the copper insoles, magnetic straps, Apos therapy et al.

    It is pleasant to feel a little more enthusiastic about life (I also stopped the anti-deps but that little experiment didn't last long). If my body demands the sulf again (although how it will let me know I have not one clue) then I will re-start and build in the proper way (and tell the hospital) . My pain levels have increased but that's probably because I am doing more.

    It's a rum old do this arthritis nonsense. :) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    DD, you often say that the medics live with the theory but you live with the reality, and it's patients feeding back their experiences that help to inform that theory and, with luck, inform it for the good of other patients.
    Humans are individuals not computer models or lab rats, and so any theory of how something might work or how best to use drugs has to take that into account. There is also the annoying fact(to patients and medics/scientists alike) that as living organisms we are not static and so just because something has worked for a patient for x years doesn't mean it'll work in perpetuity.
    It will be interesting to see how this plays out. In the meantime enjoy the window that has been opened a crack.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    As usual, Daffy, you offer very wise words. I'm not seeing the rheumatologist, just a nurse practitioner: I'm sure the information will filter through to my consultant and she might get in touch but thereagain . . . . . she knows me very well, we have a good understanding between us. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
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    I am so pleased that being a bit naughty is working for you and long may it last, you deserve it.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    I'm really glad you are feeling better, DD - you know what works for you and what doesn't. It's so nice when one has much more oomph than usual - or indeed has any oomph at all.

    Don't get carried away & overdo the housework.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    As everyone have said you know your body better than the Doc's, if you feel better for stopping sulpha carry on!! :)
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    I've been taking sulfasalazine for 16 years and I'm convinced it does nothing apart from make your urine yellow.
    I stopped the mtx (without asking) as I hated it, likewise the folic acid,I reduced the humira whenever I had a cough, which was often and I hardly ever take my iron tabs because they make my stomach turn. You know they will do their best to discourage you so you have to sometimes make your own judgments. Good luck!.

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein