daz and bloods do they really tell you the whole story

[beaker]

had my meet with my RA doctor same old story daz scores ok bloods ok so nothing more to do,,,,,so why the flare ups, sadly l am coming to realise that once RA as its nasty grip in you there nothing more anyone can do ts oh pain management from now, l used to look forward to seeing my RA doc, new treatments to help me but now l wondering is it worth it, spend a1hour wating n 5mins in the room with the doc,,,,l do honestly believe its not the doctors but the resisants put on them i.e like treat the ones that really need the treatment, and those who RA as gotten a hold off fob em off,, lf i had money to go private l bet you anything ld get treatment to help,,,,

[sylvi]

Its a sad reflection on our society today. Sylvi.xx

[missjwren]

i agree with you, im at the point that if i was to say i had a broken toe nail,they would just say it your RA. i go every 6 months to see my consultant,and im only in 5 mins, ive had RA for ten years,and have only just got to see an OT, after repeatadly asking to see one. my bloods keep showing up low to normal inflamation markers,yet i have obvious swelling and restricted movment in many joints, its so frustrating. jenny.x

[helixhelix]

My blood inflammation markers stay pretty stable too, so rarely creep above normal and if they do it usually means I'm on my knees (or rather stuck hardly able to get out of bed). It seems that there's a group of us or a type of RA that's like that. I'm lucky that my rheumy seems to recognise that, so doesn't pay much attention to the blood but goes more on how my joints are and what I say. But it does seem to mean I'm stuck with traditional DMARDS for time being, as can't make the grade for biologics. And that does worry me as I can see that the joints on my hands are worse than they were say a year ago, and my feet are now painful all the time rather than just now and then. So yes, I share your frustration. I'm thinking of taking acting lessons so I can moan and groan more to get their attention. Pollyx

[sylvi in reply to helixhelix]

Polly i know what you mean.Though my markers are up,but my joints in my hands are so sore and they are looking like fat sausages. My big toe on my left foot is very sore as well. God i hate this disease. I take loads of painkillers and and ra drugs but i still have a lot of pain.

I have to say i am lucky with my rheumy team they are very good. I can ring them up any time i need too which is good.

Love sylvi.xx

[Hidden]

Hi - I'm not really sure what to believe in terms of rheumatologists and their expectations for their patients - I'm still too new to it all really.

I did do something unusual for me earlier today and listened to my telemedicine consultation recording on my iphone from start to finish which I haven't really done since it took place - mainly because I hate hearing myself asking stuff and get so annoyed with the way my voice sounds and my tone when asking questions? I realise now that it was a very long consultation (50 mins or so) because he likes to hold forth a bit and I like to ask lots of questions. But then he hadn't seen me since diagnosis 7 months previously and was only seeing me on a tv screen so maybe he felt obliged to give me as long as I wanted on this occasion.

I'm saying this because it seems relevant to this blog - in this recording my consultant explains his expectations for his patients in more depth than I had previously realised and it gave me an idea of just how complex his job actually is. When I ask him about my consistently raised ESR and low level pain (actually it was quite a high level that day but I seemed to play it down rather which annoyed me about myself too?) he says that it's important to take everything into consideration with rheumatology but not to get hung up on specific blood test results or any single aspect of the patient's story. Treat the patient not their blood is what he actually says.

I suppose what I am thinking Beaker is that my consultant is quite focused when he's with me because I'm in the early stages of this disease still and he knows that what he decides now could still make quite a big difference. But I wonder if they just get to a point where they know there's very little they can do for a patient once the RA has got a hold - which must make them feel pretty useless too?

If you are sure that they could do a lot for you still but just aren't trying hard at all - then I think the thing to do would be to say this to them at your next consultation. Maybe they need reminding that you are a human being whose life is going up the kyber with this RA and this would get them focused once more on the human being not just the DAS and the bloods? Tilda x

[Treesha]

I know how you feel its so frustrating! I am in quite a bit of pain at the moment and have increased numbness etc but when i rang the rheumy help line was told they cannot do anything unless there's visible swelling and that i should see my gp. I think i will ring the consultants secretary tomorrow( in work today without the number) and ask why my next two appts have been cancelled and is this in accordance with guidlines. It will be a year between consultations and i am still relatively newly diagnosed. Hope your pain meds are kicking in, take care.

[emmaf]

Hi,

It's nice to hear that others are frustrated too. I feel that i am not getting the medication i need - i have an appointment with my consultant in 2 weeks time but it has been a long journey to get to see her.

My blood 'is great' according to the specialist nurse. Well, they can't be as i can't move my fingers in the morning or evenings and suffer from fatigue and pain.

They told me that i have sero negative inflamatory arthritis over a year ago and put me sulphasalazine and anti inflams. I have been getting worse throughout this time and trying to get put onto Metatrexate to see if it will improve things. They seem to think that because my blood tests are good and have no visible swelling, that i am doing ok. I thought that early and aggressive treatment was the thing to do however, i reread that NICE doc and it would appear that they don't know how to treat people with early signs. I am getting confused.

Here is the reference:

'All trials of DMARDs have had active disease as an inclusion criterion. There has been no research on how to manage people with milder and less-active disease. Studies need to determine whether it would be safe/effective for people with mild disease to be observed over time without DMARD therapy, or with monotherapy, unless their disease becomes more aggressive. It may be that combination therapies are not appropriate for all people with mild RA.'

The telemedicine consultation sounds really good - Tilda, can you tell me more about that and how to get one?

I am not sure that just going private will ensure you get a better consultant as i have heard bad stories about private doctors too. I heard from someone that you could pay once to go private with a consultant that also works for the NHS. Once you've had your consulation, you might be able to treated by that person on the NHS - anyone got any advice? Can you join Bupa for a short while? The key i think is to find a good consulatation but no organisation can recommend one - i can understand why but how can a person find one.

Is there a 'review your consultant online' site?

All the best

Emma

[2169]

well I'm sorry all but I've got to say that I have no complaint about my rheumy at all, he's helped me no end, I used to have a problem when we lived in Kent but since we moved to Surrey 14 years ago I've been really impressed with his care and concern, he can't always understand why certain things happen with bloods and inflamation etc. but he's always ready to listen to me and does what I ask.

Sorry to gloat but thought I had to point out the good in the NHS as well.

[SusanP]

Oh dear ...sound like depends on who your treatment specialist is as to how good/bad treatment you receive to help with RA. I do "not bad" I think . I have had appointment cancelled which is very annoying as you focus on seeing them soon to tell them what going on and then the chance is taken away. I have been on allsorts on meds and my body does not like them....but asked for physio consistently but not got anywhere at all...looking to go private for this type of help....

[Hidden]

Hi again. I like my rheumatologist because he seems thorough and appears to treat the patient rather than their blood. But I have very little visible swelling too and got my diagnosis because I had swollen knuckles and fingers on the day (over 9 months after symptoms began) and because I sent him photos of occasional bouts of more severe joint swelling. I had to wait over 8 months after diagnosis and being put on MTX to get seen by him again which is too long. However when I made a fuss I eventually got to see him by telemedicine. I don't think all areas provide this service but because I live on an island off Scotland this is an add-on service that exists because there are no rheumy specialist nurses up here and there are just two rheumatologists who take turns to come every two months - by which time there are usually new referrals who take priority over follow up patients.

I think you could pay to see a consultant and get lucky or have a rubbish one - the same luck or bad luck as exists in the NHS. The best thing is to do your homework and find a consultant who does NHS and private work and who others have recommended probably. As far as I can make out almost every rheumatologist requires to see hot and swollen joints before they will make a diagnosis or respond directly in a consultation. I think this is odd because RA is a systemic disease and some people don't show swelling and need ultrasound scans and inflammatory markers to have their swollen joints revealed. Also it can affect the soft tissue and tendons and even the blood so only checking the joints is a bit narrow I believe. And what about conditions such as Lupus where swelling is less visible in joints - people don't always have the classic butterfly rash or the psoryasis in PsA so this swollen joint business also seems a bit blinkered to me but then I'm just a novice so what do I know? They are the ones with experience - but I do think they should help those much further down the line too because being in disabling pain is just not okay at all.

I think I'm very lucky because I have good GPs who referred me quickly and who can email my rheumy on my behalf and this way I get my meds tweaked and can make suggestions and then ask the GP to follow them up. I've also been lucky because my inflammatory markers have been high so I have been believed despite lack of visible swelling. So I may be seen only twice a year but I have quite a good line of communication with my consultant now through my GP. I wrote a piece for the latest NRAS magazine about my telemed experience Emma but I'm not sure whether it's online yet. Tilda x

[emmaf]

Cheers for the info Tilda - never know, i might move forward more at my next consulation.

Look forward to your article.

Emma

[lorann]

Beaker, That dilemma breaks my heart! I wish I had an answer to that system, for you. But, there are things even fully treated patients have to do to help the meds work more efficiently. If you can get into a Pain Management system, and follow everything they offer to help you live a nearer normal life, then you can know you have done your best. It isn't easy. Might you be able to talk to others in Pain Mangement to see how they get along.

I wish you the best you can do. Another "trick" is to have a hobby, some kind of activity that you do every day, with your hands. Concentrating on a project really does interfere with the brains perception of pain. Take what meds you have just before starting to do something you like, and then don't let the time lapse before you take them again, overlap before the first dose is run out. My Rheumy tells me this. Good luck, hope it helps . Loret

[Danab]

NRAS has a very good helpline and should be able to advise you on where you stand and can put you intouch with someone, or have a look see if there are any groups in your area as i find that very helpful talking to others in similar situations like on here, i run a group myself and our members keep coming back. What is your DAS score and what meds are you on. How long are your flares lasting for and are you taking extra painkillers for those times. Has he talked about upping your medication or changing it, he should take it on how you are feeling, maybe you can get an urgent appointment when you have a flare so he can see how you are. Hope you get some help soon, take care Dana x