National Rheumatoid Arthritis Society

the truth the whole truth and within reason nothing but the truth!

Ok well as some of you know I work in a hospital pharmacy when well enough!
Had fab time made a cream today use weighed out ingredients , gloved and masked up yes we make things in hospital pharmacies!!
Then I was handing out outpatient prescriptions mon, tue, wed are possible rheumatology days and today was one of them!! along with dermatology.. hence made a cream and few other clinics..
Anyway handed out methotrexte 5mg(start dose) to patient.. we do extensive counselling with patients and also used to take the stuff myself!!
I will be ok on this she asked me? she told me unsuccesfully tried two other drugs. sulphasalazine was one of them!, now I DIDNT have access to her medication history.. and we have strict rules regarding access.. my guess she had either been given hydroxychloroquine or arava(lefumolide)!! same consultant as me!!
Now here comes the truth aspect I could honestly say that most patients do very well on methotrexate and a large majority tolerate it.. it did put me on a spot as personally after the dose rose higher I couldnt not tolerate. I got 12.5MG before a major crash and born,, back to glos nhs having no money and not paying for biologics.. this poor patient I coulndnt say what I say on here to her!!. she was downcast, if this doesnt work she said I will have to put up with the pain!! this in appalling state of affairs nice guidelines two failed dmards should quality for ant tnf we are both on the third!!
Saw occuptional health nurse after work feet and wrists bad. it was review appointment.. currently working 3.5hrs daily next week get to work 4hrs if I can manage it.

Im having gold injections last two weeks had paradoxical reaction.. suspending this week re attempt next week on a friday so not have to go to work like a pain ridden zombie!!. oh hobbling back to car after work and occupational health appoint saw the mentioned consultant hurrying back for her 2pm clinic!

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11 replies

    mand
    mand

    Oh Alison it's just not fair I so feel for you suffering the way you are with no sign of Anti-Tnf's to help which is what you need. The "system" is all so wrong helping all the wrong people with all the wrong things. Your so willing too, wanting to get on with your life and get back to work (not as though you have a choice about it) everything is so wrong.
    How hospitals can be so different in their approach to treating individuals is beyond me. I wish you lived near me I have a good hospital, and I'd have a good friend in you too!
    Take care Alison
    Mandy xx

    LynW
    LynW

    Hi Alison

    Well, another brush with the reality of life in the Gloucester/Cheltenham area. It certainly seems things aren't going in accordance with the guidelines. That said, the NICE 'guidelines' are just that, they are not enforceable protocols but merely suggestions of tried and tested practices. The 'suggestion' is that after failure on two DMARDs anti-tnf can be tried; it is not an automatic qualification as many seem to believe. At the end of the day it is the Rheumatologist's decision as to how he uses his budget and what he feels is an appropriate treatment for his patients; if he doesn't have much to start with he ain't going to be able to do much with it!!

    When you consider the amount of illness and disease there is then you come to realise that rheumatology is but a small fish in the sea of health service management. Money is budgeted according to 'need' (presumably) and the limited funds are naturally going to be spent on those with immediate needs such as cancer care, coronary care, paediatrics etc. There's no changing that, certain things need the money. RA can be a very painful disease but it, in itself, doesn't kill.

    You should not have to put up with a level of discomfort/pain that makes daily life very difficult. The only way forward would seem to be to move outside the area and seek a consultation elsewhere. It seems certain you aren't going to get anti-tnf where you are at the moment!

    I hope you are able to continue with the gold for now as that was one of the drugs I really believed in and I did well on it for quite a long time. Anti-tnf doesn't hold all the answers (if only it did!) just another set of side effects and intolerances. Whilst many do well on it there are also those who don't! But for you Alison, it would just be good to be able to give it a try!

    Keep your pecker up, things will get better and at least you are managing to keep going at work, albeit limited hours.

    Take care and rest when you are able, :)

    Lyn x

    summer
    summer

    thnaks lyn w will perserve with gold but having a week off gold felt more sorry for other patient than myself x

    Gina_K
    Gina_K

    Summer, what was the paradoxical reaction to gold, you probably explained before. Its not a good situation you are in, I think plan B will have to be put into action!!! How are your bloods at moment? how often do you get checked? I told you have a mimi melt down with consultant, just stop short of psycho behavior:) Seriously it is not funny & not fair! Can you write to your M.P.?

    Gina.

    emandedmum
    emandedmum

    Do you know, I really do feel very lucky to have received such good, thorough and prompt treatment from my Consultant, Nurse and GP...it sounds like I'm really in the minority! It's dreadful that you're having to suffer Alison, I agree with Gina though, have major tantrum at your next appointment...you never know, you might actually get somewhere. Also, do write to your local MP! Hope gold goes well for you this time and you get the chance for a restful weekend xx

    summer
    summer

    it iis a lyn says funding shortages

    Tricia-P
    Tricia-P

    Ali Al Ali
    worried for you, slow down a bit chick if you can, and what as Gina says was the reaction, the gold maynot be the longterm answer but may be enough, have a go at the rheumy maybe that will shake things up. Ask them about trials as well cos I managed to get humira when mtx and sulpha salazine didn't work and I offered my blood and a pen to fill in forms.
    Thinking about you
    take care see you soon
    xTx

    summer
    summer

    worked this morn saw a chart for inflixmab infusion one lucky or rather unlucky patient getting it not my consultant! infused as day case i dispensed it!! went to hydro in foul. mood/ upset mode didnt sleep well so cross.. she said wasnt well enough ans told me to ring rhum. my dr has the physio had too im damned of Im going too, or not til I have calmed down

    Sparkle
    Sparkle

    What a v v stressful time for you Ali especially if not being able to work causes a whole host of other stresses. eg financial etc Although TNF may not work in many cases they do seem to help so I can understand why you woud like access to these drugs. I guess you are just at the point you would like to try anyway. I am too( in my case biologic Rituximab. )
    Can you talk to your counsellor/local paper? Would they be sympathectic to your case that you are trying to access all treatment options in order to hang on to physical function and to work. One of my carers of the day centre I manage has just involved the local counsillor re dementia medication. Its working a treat and the hospital are really jumping!
    Surely giving you access to whatever drug works is cost effect? The Gov is so hot on not encouraging people to end up on long term sick. If you choose to give up for quality of life and to manage the disease better that can be a positive choice for some of us- but its not a positive choice if you feel forced because you cant get effective treatment! That`s a sure way to create feelings of injustice Anger Powerlessness and depression. My heart goes out to you. Im despewrately trying to think what you can do other than just take it.
    Can you change consultant? Contact councillor or maybe phone local press!
    Problem is it all takes energy and is stressful which doesnt help RA etc.
    I am sure you will get to try it soon. There is an old saying .......IF you throw enough sh1t against the wall- eventually some of it sticks ! At least we can vent on here
    Fingers and toes crossed for you
    fiona xxx

    summer
    summer

    i havent got the energy. two bad nights sleep and bullying from a couple of the "unqualified staff! assitants re chair went back to occ health. its like telling tales!! I FELT LIKE WALKING OUT it was a bad day in general busy and every one was stressed ¬

    Sparkle
    Sparkle

    That is the trouble it does take energy. Hope it sorts out soon
    x

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