In light of helixhelix post..can anyone offer insight on how to take better control of our future health within the NHS?

Hi all,

helixhelix thank you for flagging this up. It chimed into how out of control I have been feeling re my own health situ being an NHS patient. I was ticking along nicely on Enbrel for AS until a letter from up above landed on the doormat. It said your being switched to Benepali, and without any further ado it came to pass.

Needless to say I have had issue with this bio similar, its messed me up good and taken so far six months of my life and turned it into crap.

Cut to the chase you say! I wonder if someone can enlighten me on what to look for in my 3 monthly tests, obv I will Google it as well, but any other input would be ace.

All I know is ESR and CRP but not ranges I'm in or whats normal, or exactly what each value means if im honest. Should I be tested for TB each time too, I don't know. Any help would be golden. What other parameters should be taken?

Btw I'm not slamming the wonderful NHS, they are the best, and I am very grateful for every bit of care I've received. Just trying to take ownership of my own future health too.

Thanks!

D

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14 Replies

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  • Ask for a printout of your results. The normal range will be shown alongside your readings. Any abnormal ones will be starred

    No you do not need another TB test

  • Will do, thanks Pat!

    D

  • I've been told I only need yearly blood tests whilst I'm taking Benepali?! The story in the news had made me nervous..... What have other people been advised about frequency of blood tests?

  • Nurse said 3 monthly but rheumy said monthly. I go with her!

  • Hia!

    This is alarming, please please don't let this slide, it should be monthly initially and every 3 months once you are stable.

    D

  • I did think that didn't sound right. Going to double check with my rheumy as it was my GP that told me yearly.

  • Hi Deminem, I have been collecting all health data for three years. Amazing what the doctors do not tell you.

    The life labs in BC have an online program called myehealth. It is fantastic and free. It not only provides numbers but charts to track it over time.

    I cannot stress enough how important it is to stay informed. A doctor has hundreds of patients with any number of illness. You only need to know your body. As recent events demonstrate re nurse, you cannot assume your doctors is on top of things. They work in an impossible system. It is your body so your responsibility. Start with what you are comfortable and build from that. In my case it calms my anxiety. I would rather face this with eyes wide open. I am done g time for me to take back my life. Hope you are all well 👨‍👨‍👧‍👦💏🌹

  • Great advice Damaged(we all are, wink!)thank you.

    What you say follows logic, and I'm a logical kinda chic.

    GP'S just can't keep up, and they can, and do make major mistakes as the guardian article tragically shows.

    Dem

  • Wow, that is certainly a great wake up call. Be vigilant at all times. What an inexcusable situation. How does the family ever trust another doctor. I can only imagine the guilt they must be feeling. I appreciate that my doctor was very responsive to my concerns. I think they sometimes need a reminder that they are dealing with a person not an illness. Take the time to actually listen.

  • Unless you are going to take a crash course it really won't help if you scrutinise your blood test results. If one reading is up, & another is down, they may compensate OK. But reverse the position & it may not be so good.

    Keeping a record is good in case you need to see a doctor who does not know your history, but poring over something when you don't know what you are looking for is not to be recommended.

    Have you spoken to your Rheumy nurse about feeling so bad on a Biosimilar? I find they are really helpful in situations that rheumies often don't want to get involved with,ask her if anything can be done.

    But please don't worry yourself unnecessarily, about blood tests that take a lot of training to understand,

  • Thanks for your feedback Agedcrone,

    I have now spoken to my rheumy nurse and she on it for me.

    I have had growing symptoms and that I've dismissed so now they have piled up to be an avalanche. Funny that we put up with being sick so much sometimes that we don't no what is normal, when to complain, and what is a step to far.

    D

  • I'm an old lady Deminem & I won't put up with all the rubbish some Rheumies have tried to push forward...Thankfully my Rheumy of the last ten years has been wonderful....I sometimes wonder if he's scared of me!

    I do hope your Rheumy nurse sorts everything out for you, & gets you more comfortable very soon.

    I find if you explain calmly what is wrong they are only too pleased to try to help. But I have seen some patients ranting at these poor women who are so busy, & I think I would shout back something not too polite!

  • So Just to be clear, Liver function should be tested too right? What about full blood count?

    So it's..

    ESR

    CRP

    LFT

    FBC

    Is that accurate?

    Cheers rheumy family!

    Dem

  • Hia rheumy fam!

    Quick question. I got my first test print out today, yay to taking control!

    Bit confused. Is it possible that my crp is always 1mg/L?

    It says Serum C reactive protein =1mg/L on all three 3 monthly tests, eh!

    Also ESR is 10, why does that sound weird or wrong lol?

    Cheers

    D

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