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Humira advice please for carer

Posted , 3 users are following.

Wastwater
Wastwater

Hi my wife is the one with RA. Diagnosed 2yrs ago. Methotrexate + steroids then sulphasalazine 6 days severe reaction. Leflunomide 1day severe reaction. Nothing 5 months then Enbrel 6 months some relief then infection stopped 2wks recommenced never improved again, got worse. Now humira 3 injections so far getting worse by the day. Pain off the scale, mobility worsening, severe exhaustion, feet so painful, all joints same. Sleep so disturbed 2hrs at time if lucky. Has also had ME and fibromyalgia for 10+ yrs. only 55 so so painful to see. Wants to stop all treatment as been 2yrs hell, so so much worse since treated.anyone experienced same, any ideas tips etc? We are both nurses so reasonable sensible re health issues but this is killing my wife, no life at all, no light at end of tunnel RA consultant ignores ME fibromyalgia, ME ficonsultant saw for 10 minutes no assessment heard word RA and blamed that and discharged. My wife needs her life back HELP PLEASE

1 like, 5 replies

5 Replies

  • kim14519
    kim14519 Wastwater

    Posted

    Hello Wastwater.  I also have fibromyalgia and RA and had ME following glandular fever.  Tried all of the above except, I think, Enbrel, plus infusions of Rituximab, all without success and some with reactions.  I now take 5mg of prednisilone per day (was trying to get off steroids but advised gland will no longer be working), meloxicam for costochondritis and, when pain really bad but becoming more regular with plotential trapped nerve, sevredol which also makes me sleepy.  Sleep is always a problem and at one time I tried amitriptylene which did seem to help.  I also read in bed.  Maybe your wife's GP could advise if something might help her sleep as lack of sleep is very debilitating.  Fibromyalgia with RA is difficult as I have difficulty myself in divining what's causing what and so deflating when you hope for help but don't seem to get it.  I never saw a fibromyalgia consultant but I notice that sometimes the Rheumatology Dept says that possibly whatever symptom is due to that.  I also take an antihistamine every day of the year and ask the GP to vary if I don't feel any benefit.  Think I'm the British Felix Unger!  The RA was diagnosed 7 years ago but I've had a chronic neck and back problem for far longer and although disc problems were diagnosed I still wonder if that's RA too.  Depending on how I am at any particular time, I increase the prednisilone but as with the sevredol, I hold off as much as I can.  This regime started with my GP following up my excruciating journey to A&E while waiting for my first appointment at Rheumatology because the swelling in my hands was unbearable and I'd happily have cut them off (it was only one hand at a time) and I don't think I'd have coped otherwise - I was driven mad with pain.  The A&E doctor gave me the steroids (40mg) and injected morphine with a very strong recommendation to be admitted but I went home.  My weight is now a big issue but I can't lose it with the steroids.  They also make me more energetic while reducing inflammation but, as you will know, they bring their own problems.  With the ME, I was crawling upstairs but eventually started back at work on a part-time basis and got back to something like normality although I'd thought going back to work would be impossible.  I hasten to add that not everyone is the same and don't for one moment mean that your wife could do that.  Your wife is obviously very distressed with her situation, as are you.  At the time I had a young neighbour who had huge problems following brain surgery and I try always to remember that I could be worse.  In a nutshell, I would try to sort out the lack of sleep then consider even a small dose of steroid to try to ease symptoms and hopefully help lift spirits.  Also get advice on how best to ease pain.  Don't know if physio and occupational therapy might also help - your Rheumatology Dept can refer.  I hope I'm not trying to teach my granny to suck eggs and wish you both good luck.  Apologies for being long-winded. 
    • Wastwater
      Wastwater kim14519

      Posted

      Hi Kim,

      This is Dawn, Wastwaterman (Simon's), wife replying to you.  

      Firstly, thankyou so much for taking the time to reply and it was not long-winded, but infant very informative.  I sometimes feel guilty for not sharing my own experiences, but you will know only to well how "alone" this miserable combination of hell's conditions can make you feel!

      I have stopped all treatment after 2 years and am taking a "morphine"holiday!!  I have not totally given up hope and am seeking a second opinion from a consultant in Oswestry, Dr Askari. He looks at the whole lot, admits you for a week of tests, physio, OT etc,etc and then looks at treatment options.  His opinion and advise may not give any new answers or even treatment, but at least it is an holistic approach.  The consultant I have been seeing only looks at you as an RA condition and although not said, does not, I believe, consider ME to be real!!  Like myself you have probably met many dr's who are less than sympathetic!

      Again thank you so much for responding and caring about someone you do not even know.  I now feel less alone and realise I have been selfish in not sharing my experiences with others out there.  So you have also encouraged another sufferer to "share".

      Thanks again.

      With my kindest regards.

      Dawn

    • kim14519
      kim14519 Wastwater

      Posted

      Hi Dawn.  Thank you so much for this.  Firstly, don't feel selfish in any way because when you have so much pain it's difficult enough to deal with.  I like the sound of Dr Askari as, you're right, many specialists only look at their own area of expertise whereas I get the feeling that RA could be the culprit behind almost, if not all, of the things we have, eg  the exhaustion of ME and the discomfort of fibromyalgia.  The difficulty in getting a positive diagnosis (only one of my blood tests has shown positive for RA when the reading was 225) maybe means that people think they have one thing when possibly it's RA.  I was "fortunate" with ME because I'd had glandular fever which I was eventually told was almost a stick-on to cause ME whereas I was beginning to question myself.  In those days it was "yuppie flu" so I was almost embarrassed to tell anyone, even doctors, but both my GP and employer's doctor knew me and recognised ME.  Anyway, I try to divest myself of any guilty or embarrassed feelings and recognise that doctors have limitations too, eg  the lack of knowledge about these conditions -  although it must be getting better with the records being kept - and misconceptions that mentally stable people want to be ill with a condition that doesn't exist.  Maybe if the consultant only hears the symptoms but not the term ME they might be able to better address the particular problem?  It was also explained to me by a GP that if a surgeon cannot operate on you then he's not interested - in other words, if they can't help (with ME because they don't understand it), there's nothing they can do, therefore,  it's not personal.  It's not about me, or whether I have the illness at that stage, it's about whether they can do anything or know anything about it.

      As far as sharing is concerned, I wish we all did more.  When I go to the Rheumatology Clinic nobody speaks to anyone in the waiting area although we're all there with more or less the same thing.  I find myself looking at people to see if their hands are swollen too, etc!  Take heed of the woman who, like me, was heavier than usual and had puffy hands but still had beautifully manicured, painted nails - I liked her, nothing's going to keep her down!  (As a former devotee of high heels, I must give some more thought to devising some attractive shoes!)  Much luck in Oswestry - I think you may be on to something with the "big picture" idea.

      Best regards, Kim

    • Wastwater
      Wastwater kim14519

      Posted

      Hi Kim,

      God bless you you've made me laugh!!  Maybe you should write a book!  You sound like me the bolshy, middle-aged, angry, botoxed, filler faced, I WANT MY FIVE INCH HEELS BACK woman I had almost given up on.  I'm with you all the way!!

      Thanks again and I will let you know, after my "morphine holiday" how things go in the next chapter of this journey!!  Humour is great and you're right why do we all sit in the waiting room sneaking peeks at other peoples hands and feet, except in my case, coming from the Midlands, openly doing so.  I"ve tried to instigate conversations and I do not understand the reluctance to talk about this?  Maybe people feel doing so will only make them aware that there might not be any hope?

      Thanks again for the smile with your wonderful sense of humour and wit.

      All the best, Dawn

  • kim14519
    kim14519 Wastwater

    Posted

    Excuse me, Dawn - what do you mean "middle-aged"???  (Only joking - I'm actually 58.)  All fits me to a 'T'.

    Best regards

    Kim

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