Am I stupid or what: Hi I have not been blogging for... - NRAS

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Am I stupid or what

Beeper profile image
6 Replies

Hi I have not been blogging for sometime, sorry but have been reading all you blogs. Well just a quick history for those who may not have read any of my blogs. I'm 62 next month, had RA since 97, had two hips and two shoulders replace the last once jan just gone. I was made redundant and am now retired. I have only just got disability allowance after may years of trying. Anyway the main reason for this blog is I we t to see my RA doc for my yearly review and again I have a new doc. The last one lasted for one visit, the one before that I had for about three years. Well this new doc said my blood test are all wrong and no wonder I am not feeling well. My joints are cracking, I'm in pain more, tried etc. he said I have been on the wrong meds for over a year. Now I have never asked what the blood test results mean I just let the experts do their stuff. How I feel I except has a part of RA. I am going to have to go onto injection next month. Now should we question our results and understand them or let the docs take charge. I'm not angry, life's life. Well we,ll see how the injections go.

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I don't know the answer Beeper. I think its hard to say but for me I like to know as much as possible about RA , my test results, drugs etc however I'm just like you about my underactive thyroid and just assume my GP knows what he's doing. I have had him phone me about three times over 12 years to say my dose of levothyroxine was too low or high and I just shrug and say fine - but not with RA. I guess if you don't get involved then you can't criticise anyone or feel cross because you don't know enough? Do you know what drug you are going to inject I wonder? Tilda

Hi there Beeper. Are yearly reviews annual appointments with your rheumy? Because if you only see him or her once a year it sounds as if you have been putting up with a lot while waiting for this last appointment. I'm wondering why you didn't contact your GP or rheumy nurse or someone earlier seeing as you've been suffering - possibly you've been a bit too patient??

As for blood tests - if your GP checks them they should let you know if the results show your liver's not coping with the drugs etc. But if the tests show high inflammation levels, i.e. very active RA, I think they sometimes leave that for the rheumatologist to address.

I take a lot of notice of my blood results & so on but I can imagine that I might not want to be so involved once I've had RA as long as you have! But from what you are saying it sounds as if your RA is kicking off at the moment & sometimes it seems that the only person who can put the jigsaw pieces together is the patient. With a new rheumy who sounds quite proactive and a new drug perhaps this would be a good time to take a bit more control yourself?

Glad to hear you've got your disability allowance and I hope the injections make a real difference. Luce x

SlimJacqui profile image
SlimJacqui

Hi Beeper

Glad to know you got your disability allowance,

I try and get as much information as I can about the drugs I am put on, my Remmy consultant gives me leaflets about drugs and blood a info so I can fill in my NRAS care plan.

I would say ask questions is your body and your pain.

Take care

Jacqui

helixhelix profile image
helixhelix

Hi there, and well done for persevering and getting disability allowance. Hopefully that should make things a bit easier for you. I do think it does help to keep track of your Ra yourself, I've found that since I've learnt more about it I have better discussions with the doctors. Have you looked at the NRAS site (nras.org.uk)? as they have some stuff that you might find useful to get your head round it all -like the care plan. here's the link

nras.org.uk/help_for_you/pu...

Polly

Sharon56 profile image
Sharon56

Hello and well done getting DLA. Sharon

DebbieLovex profile image
DebbieLovex

well done on finally getting your DLA

to answer your question In my personal opinion I do think we all should learn more about the blood tests, I'm only 21 but iv been trying to learn everything i possibly can about the blood test, medication and my RA because all though doctors are the professionals, at the end of the day even they can make mistakes! in fact on my last blood test the nurse glanced at the wrong haematology result and she put in the wrong crp on my new blood monitoring sheet and so if i didnt think that looked familiar and compared it to my other blood sheet i would have carried on thinking my crp was still 44.4 when it had actually went down to 7.7, it was a minor mistake though as the health center was rushed of there feet so i dont blame the error at least it wasn't actually a mistake at lab but i think if we ourselves know a bit about them and look out for regular flare ups side effects ect, making sure we know what our crp levels are then we can know if the meds we're put on are working right, because as well at the end of the day they may be the professionals and they can do all the tests in the world but it our condition and different drugs work for different people

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