Annual offload

Well had my meds stopped after high liver readings 9th time in three years, off opiates and on gabapentin (neuropathic painkiller)still experience sharp pains at least 5 times x 1hour daily last december told to push for biologics so appointment in may (yet another different consultant)mentioned biologics and got a no due to side effects etc (what like the ones mtx have consistantly caused me)had mri on knee wear and tear yet still severe pain in them, so letter comes in june for comprehensive blood tests and an appointment at my local city hospital for august, so I struggle 30 miles on public transport get there and the rheumy nurse says im here to prep for anti tnf,oh I said I didnt know,"let me check"so it turns out nobody knew why I was there, had some xrays, dax score too low for upgrade, so I questioned my diagnosis but stipulated I didnt want to make waves, told me my blood tests and nodules pain movement etc were all consistant with my diagnosis,said she would get back to me,well november now and an appointment booked for monday, the problem I have is I feel abandoned and have given up, I have pain every day, on anti depressants, so tired all the time due to interrupted(I.e up, painkiller wait 2hours to work properly!) I am not assertive and a quiet life kinda guy, so I just know that the outcome of mondays appointment will be another bewildering fobbing off!thanks for listening ;-)

8 Replies

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  • Hi niall451,

    so sorry to hear that you are feeling so bad and that you are in so much pain. If you would like to have a chat about things please feel free to call the helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best wishes

    Beverley (NRAS Helpline)

  • Hey Naill451, don't you be giving up now cos us newbies need your wisdom and experience (and it sounds like you have plenty of it to share) to steer us through this minefield called RA. Maybe chatting to the NRAS help line will help you find a positive approach to Monday's appointment and enable you to be heard... is there anyone you trust whom you could ask to accompany you to the appointment so that you don't feel so isolated?

    Take care of yourself and good luck with things.

    Ali

  • NRAS helpline is great - I used it on Friday and was calmed by letting off some steam. I often feel abandoned by my medical team - am off all RA meds and Gaberpentin and it makes me feel such a failure but my body just doesn't like many drugs at all and rejects them regardless of how helpful they are for my RA.

    Like yourself I don't quite meet the criteria for Biologics in terms of DAS but do for failing three DMARDs to date. My main symptom currently is peripheral neuropathy which is really severe just now and I'm also struggling with a degree of dizziness/ disequilibrium. So the combination of symptoms with dry eyes makes me feel I've landed on planet spacy! I keep feeling I'm going to topple or that a small step is a cliff summit unless I'm on very known and predictable surfaces. I see a neurologist in three week's time but, like yourself, am expecting just another "grand fobbing off" as you so succinctly put it. Fingers crossed for both of us that our expectations are turned upside down - in a very good way I mean.

    Twitchy

  • I am quite when it comes to standing up for myself, so I finally took my husband with me to see rhummy. He said that I was not coping with the lack of sleep and constant pain, that there must be more that they can do to help me. It really helped me to have someone on my side and I did finally get a result after nearly a year with no meds other than celibrex . Is there no one who can go with you for support.

  • I'm confused - are you getting anti-tnf or not? I've not heard about bad side-effects and am on the third one myself. the first one worked for about ten years. I get the feeling that the medics are so overworked they confuse us and themselves! I hope you can get some proper treatment soon.

    Cathie

  • Poor you. Perhaps if you go in imagining that you are representing someone else, it will enable you to be as assertive as necessary. Or take someone with you for moral support. I wish you luck . Jo

  • I take a short summary of what has happened since the last appointment and a list of my queries and check it frequently during and at the end of the consultation. If there are any issues not covered I ignore the expressions of impatience on the consultant's face and continue to press for answers.

    I also summarise what the consultant has said the plan is until the next appointment - sometimes I find that what I understood is not what he meant. I say "so what I'm going to do now is...."

    This doesn't always work - but I have found it helps me to get more out of the consultation.

  • Well said 'oldtimer'. I also do the same for all of my medical appointments. After discussing all my issues, I leave the note with them. My GP is all for it. The note gets scanned and placed on my medical record. It saves them having to write up so many notes. I also agree with the summary... it is very easy to misunderstand what has been said to you. Essential with foreign doctors where English is their second language. I usually take ongoing 'bullet point' notes as well. I have found most of the medical staff to be completely understanding about it.

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