Right then... moving forward

Well that's it then. I am better now. Thank you very much. You know I have been waiting to see the almighty one (my rheummy consultant) since I first saw him in october. I had so many questions, and I got a few in, whilst he was ducking and diving and trying to gather his papers up into my file and shuffle me off, because I am obviously better now. Didn't he tell me he would get me better... errr can't recall actually. I told him I remember him telling me off because I was late and as I was the first appointment of the afternoon, I would make everything else late and that I was responsible for upsetting his patients. Ah yes he says I remember you now. Cheeky monkey!

Well the Mtx seems to have done the trick - 20mg each week - keep doing the bloods once a month. Do you get sick, nausea? I did, but that has subsided - alot - but seem to get loss of appetite on and off. Hmmmmm. If it gets too bad you can have the injection. I would really like you to stay on the old Mtx because its working Great!

Any way, he says according to my last blood test on 20th April (which I insisted the nurse and the GP ask for a CRP because they normally only do the liver function and RF factor) I am now normal. Ta. So I says how come I still feel crap and tired out and my knee still hurts and my wrists hurt and my hips crunch. Ah well you have OA as well you see and that will be what it is. So?...... And.... you have to back to your GP. Oh ok then.

What's my ESR then? Don't do that here, hospitals and different regions do different things and depending on which lab you send the blood off to, depends on what results you get. Well all I can say is. I am glad I am the blooming patient and not the doctor. Bless him. Then he went off on some story telling me he trained in Oxford and they do this, that and the other fanny fangdango. Right. I say he lost me when he said Oxford really?? But he told me my CRP was >8? 8 is normal, so I am below normal... or is that sub-normal, subtle difference methinks.

How you sleeping he says. Well that depends sometimes ok sometimes not, but I have just had nearly a fortnight of fatgiue and get off alright but wake up around 4 and then can't get comfy and have to take more painkillers and then I can't get up at 8 to get to work. MMmmm that's the RA some people don;t have the fatigue, some (a minority apparently) do and some people find that the fatigue goes away with the RA symptoms and some (very few) find the fatigue stays with them. Right. You can have minor flares, this might be a minor flare... Oh even though bloods say not. Oh yes..

What about exercise then I ask, because I feel unfit and don't know how much i should do. Ah,... better check the lungs... check lungs... ok nice and clear. I suggest you go swimming he says. I say my local pool has closed because more water comes in through the roof that they have in the pool. Ok.... go to the next nearest. Ok I say... Ta.

What's happened to the Physio appointment I was told I was going to get. Ah no you were referred to Occupational Therapist, No I said Physio therapist because it's splints for wrists I need to work with... Love nice homely Nurse Jenny then comes into the room. Beams at me asks me how I am, how I am doing on the old Fluoxetine and Mtx, asks if I have sorted my family out and put them right, Asks how I am sleeping, how my hands are and my knee and back and all sorts of other things. Doctor sits there like a gooseberry, looking at his watch. Right.

Lovely nurse Jenny says good to see you feeling better, blood results last time were normal.... thanks nursey. I have an idea that perhaps nursey should be paid consultants wages and consultant could be sacked. Think of the saving....

I always knew I should run the blooming country. Me and a few other females...

get it all sorted..

So that's it then, give this bit of paper to receptionist and I would suggest you see nursey in 4 months and you see me in 8 months...Okey dokey. Hop skip and jump, I'm out.

I really don't know what I expected....hope this is useful to someone. It helped me heaps... I think.

See you on the Christmas Tree? (My old dad used to say that - I haven't a blooming clue what it means!) Answers on a post card please, ta.

Lots of love peeps, and go careful out there. It's a blooming minefield.

Julie xxx

[Hidden]

hmm you have experienced typical rheum appt!! welcome to my world.. you can get even better or rather the same service at my hospital... ha ha.. not funny I Know..

IT IS the Occupational therapy that you see for splints... I know cos ihave been there ,have several.. the occupational therapy dept is actualy one of the few good depts at my hospital.. real patient skills and professional and efficient.. they also sorted my stair rails by refering me to social sevices v promptly ps im never late for consultant appoint though she

is always over an hour late!!. nurse is more prompt and v brisk in more ways than one¬!!.

[Hidden]

Ah well I have to apologise to my consultant, but my nursey said Physio though. Either way, I haven't had the appointment come through yet! It's been 12 weeks since I was referred... Ah well.

Julie xx

[Hidden in reply to Hidden]

trust me some consultants and some nurses good and some appear a bit lacking..if you know what i mean.. any way was left by mine to sort own physio and occupational therapy!! was it because they couldnt be bothered or assumed i would do it cos i work there who knows?? x

[emandedmum]

Ha ha, this made me smile Julie! All so true, it's the first of many appointments you'll experience where you're left feeling a little bit dazed and confused! Glad you managed to make some sense of it 8 months is a long time so they must be pleased with how your RA is responding to the mtx. Go to your GP and tell them what you told us, oh, and ask for referral to OT. Again. xx

[Hidden in reply to emandedmum]

Hi Jo, yes I will be chasing that appointment up. Glad I made you smile.

Julie xx

[Hidden]

How do you actually feel though Julie about that response? I was wondering if you felt abandoned as you still have fatigue, pain and other troublesome symptoms. Although it seems low I dont understand that stuff about the CRP I thought it had to be lower than that. Are your hospital trying to reduce follow up appointments?

Please forgive me if You feel I am being too cynical.

I just wonder if your alternative treatment has helped you too -. Cos you seem to have improved since then??? Did come across a good site which gave all the clinical guidelines for so called medical remission. It actually said CRP less than 2 and ESR less than 20 plus no inflamed swollen joints or fatigue.

Going to put a disclaimer on that tho as Im not medically qualified and will come back with the site reference later when I track it down again. Pretty sure it was trusted though.

Take Care

Fiona xx

[Hidden in reply to Hidden]

Hi Fiona, hmmm well cynic is my middle name. I did feel a little not exactly abandones, but right then, you're bloods are ok, so you are ok, so where's the next more deserving patient. I'm pretty sure I am not an attention seeker, but I did feel like he didn;t want to know about my aches and pains. I questioned the result of >8 because I thought I didn;t really know what that means. He said it is the scale they use "down here". He said he hadn;t come across any other hospital which used this scale, but on that scale they used 8 was normal??? It makes you feel left out because others on here go on about their levels and they all seem to be the same, but this is definitely different. Let me know what site if you find it

Julie xx

[Tiasteph]

Oh dear Julie, is there another hospital near you?

I am happy with my Rheumy but have had ones I wasn't with in the past & I do feel it's really important to have someone that you have faith in.

As your nurse is nice you could contact her directly, I email mine now when I want blood results or advice & am happy to see her instead, when I don't need joints injected etc.

As for GP's...don't get me started, we need specialist advice, so how is your GP as a "General Practitioner" supposed to help!?

Honestly it really bugs me, grrr…

As Alison says, OT is the place for splints & supports, maybe call the nurse to get you in soon?

Sometimes you do have to pester to get things done

Steph xx

[Hidden in reply to Tiasteph]

Well the main hospital and head consultant is in Barnstaple, but I always get my appointments at Bideford, which is only half the distance away from me. There is also the two hospitals in Exeter but those are a good hour or more away. I think you're right I will go to Nursey if I want to know anything. Like you say, GP's - just glad to get you passed on to someone else I think. but I shall have to go and see here about my knee because I all but fall over when it decides not to take my weight, which can be at any time. I have to be careful how I put my feet down and concentrate on how i am walking all the time.

I shall pester

Julie xx

[Tiasteph in reply to Hidden]

Aw, Knee sounds bad, mine were awful, I could not walk a few years back, was ready for double replacements, so there is hope!

You live in the area we would love to end up in

Really love Croyde Bay, off there this summer…

I must say I did wonder about hospitals, well you do when you have an illness don't you.

Carry on pestering xxx

[Hidden]

Hi Julie,some consultants, they take one look at you bloods they look fine and hey presto you must be feeling better! Not!

Don't be put off by them either be persistent even if its with the nurse or changing consultant, its your right to change if your not happy remember!

It is the OT (occupational therapist) you need for splints etc they will sort you out there. My advise also is that when you ever get an appointment with a OT Physio etc always ask for a follow up one as they don't always give you one. That way you won't have to go through all the hassle of being referred again even if it's 4-5 months its better than waiting again!

Makes me realise how lucky I am with my consultant and nurses even a good GP, wish you were all treated the same, you should be it's just not fair.

Take care Julie and hang in there chuck!

mand xx

[Hidden in reply to Hidden]

Thanks Mand, I shall get back on to them next week, just feeling a bit fed up with it all - unusually!!!!

I am hanging Mand, just about -)

Julie xx

[Hidden]

Hi Julie

Hmm.... clearly we have a consultant here who might know the facts about RA and how it is 'supposed' to affect his patients but, in reality, knows little of the actualities the disease brings with it. Yes, they can blind us with science about various procedures and lab tests, all text book stuff, but when it it comes down to how it affects day to day living it's another matter completely!

Although you still have some symptoms for the main part the RA is controlled is it? Whilst there is this strive for so-called 'remission' I don't believe in it. To me remission is when you recover, when you have no illness any more and you don't need the wagon load of pills to hold the disease back. Control is when most symptoms disappear but you maintain drug therapy. I have been controlled several times but would never consider myself to have been in remission! No, no, no ... it's coming with me, everywhere I go, for however long it wants!

You should have received a proper figure for your CRP, like 3 or 4 not >8!! Heyho!

At our NRAS local meeting next week our Occupational Therapist is the guest speaker; it's a shame you are so many miles away you may have found it interesting. See you if you can get some splints that aren't the 'uniform beige' colour. I met someone at the Warwick meet who had some dark blue ones ... they went well with jeans!! I was quite envious

Take care Julie, you are doing so well. Hope the progress continues

Lyn x

[Tricia-P in reply to Hidden]

hi Julie

you are right it's definetley right its a minefield, but you should be told your ESR mine is 3 at the moment but I hurt like hell sometimes, I told nursey on monday about my sweats oh thats the inflamation, I'll write after I have taken in what the nursey and osteo

has said.

Thinking of you all.

Triciaxxx

[Hidden in reply to Tricia-P]

HI Tricia

I get those sweats i know they are sometimes because of steroids Im on lowish daily dose of 10mg a day at the moment

but does inflamation cause it too.? My ESR wont budge below 37 at mo and CRP is 57. Had too ditch metho and waiting for enbrel any day.

[Hidden in reply to Hidden]

Hi Lyn, yes I've got some dark blue ones! (sorry!) like you say very different to the normal beige.

I agree about remission, I think the disease can be well controlled by today's drugs, then it becomes a matter of is it remission or just being controlled well? There's no cure so to me it can never go away, unless as they say it can burn itself out or can it I don't now.

I think there can often be a mis-diagnosis as ra can be mistakenly diagnosed when some other autoimmune disease is playing a part, therefore people feel that they have had a remission or its simply gone away! am I making any sense?

Mandy xx

[Hidden in reply to Hidden]

Hi Lyn. You have hit the nail on the head. He knows his stuff but.....it's your typical un-holistic approach though isn't it? You are just your disease not a person. Arrghhh....

Yes, for the most part the RA is definitely taking a back seat. No puffiness in my knuckles fingers and toes and ankles like there used to be and even my knee has gone down. But I am left with this lump on my knee and it gives way when I don;t concentrate on how I am walking and put my foot down wrong. I ask for a definite figure for my CRP sat there with pen and paper and he just fiddled with his papers and said... below 8 and 8 is normal so he was happy with that. Yes but what about me???

I shall pester for my splints and follow this up next week. Thanks for the advice me dear and yes I do wish I was closer, and could come to the meeting. I think I would look nice in blue too!

Julie xx

[Hidden in reply to Hidden]

Hi again Julie

My Right Knee is dodgy too. I ended up in hospital for 5 days cos I couldnt put any weight on it due to pain and inflammation. I didnt know it was RA. Went to casualty and they kept me in.Thats when they diagnosed RA. Now my knee gives way if Im not careful and when I dont expect it. I can never see my consultant- except for once a year. He says the trust is targetting new appointments. It has to be wrong when other people are seeing theirs 4 weekly 3 monthly. Oh god Im always on the trail of something. Now I think i shall look and see if there are protocols for follow up appointments on NICE clinical guidelines.

No physio- no ot referrals here. Think I migt move to your area Wiliby !!!

Fiona xxxxx

[Hidden]

Hi Julie,

I read your blog a couple of times it made me smile!

Oh my gosh though he sounds dreadful, I was diagnosed Feb this year, CRP came down from 78 to 10 so when I saw my consultant last week (3rd visit since Feb) I expected him to say that meds were working and that would be as good a it gets, but no, he said he still wasn't happy, I would continue to see him every 4 weeks until I turn up without any swollen joints!!, I've seen the PT 3 times and the OT 2 times already, bloomin eck my consultants much better than yours!!!!lol

As sparkle suggested, it does sound like you've been abandoned

[Hidden in reply to Hidden]

Hi Wiliby. I suppose that's it. My joints have definitely deflated. They look normal, except for the knobbly bits on my knuckles and a wayward little finger. You must have had it worse than me. Makes me feel like I am making a fuss over nothing. Perhaps I never had RA???

[Gina_K]

Hi Julie, Great blog as usual - left me confused never mind you! He sounds like a little shi..! As someone else said how are you feeling? I thought you were feeling quite tired & down recently? Is this good news for you? I am going to look at my bloods this month & report what they are and see what everyone thinks, I never ask anymore! I have never heard any mention of a DAS score either!!! Seeing consultant in June & orthopaedic surgeon, but I use all my salary on medical expenses so they dare'nt be rude at €150 for 15 minutes work!!!

[Hidden in reply to Gina_K]

Hi Gina. Thanks for your kind comments! I am feeling a bit better than I was, but I still am not as perky as I was a couple of weeks ago. I am also so tired, not just fatigued, but want to sleep and sleep. It is good news that the inflammation has subsided, which is what does the damage so I am please with that. But I am left with these crunchy joints which seem worse now,although not that painful... it's weird.

I can't imagine what Iwould do if I had to pay for all this, so I am lucky in that respect. Good luck with your appointment and let us know what your blood results are.

They do not do ESR tests "down here" apparently. Sounds like the back and beyond!

Take care

Julie xx

[Gina_K]

Ah Julie,

You have no idea what its like for you to say 'crunchy joints' thats inflammation, is it in your wrists? I had crunchies for such a long time. Only a little crunchy these days, is'nt it such a weird feeling, like there is putty in your joints could never explain it. I have had steroid injections in wrists & hands a few times and things seem to have settled down over the last while thank god!

[Hidden]

Sorry Julie I have had a real bad case of verbal diorear ( I can NEVER spell that) today.

one of the sites i looked at was About Athritus.com. It is reviewed by the medical review Board .There are loads of different links. However one link about blood the CRP blood test says: From lab tests on line,

A higher or increasing amount of CRP in your blood suggests you have an acute infection or inflammation. Although a result above 1 mg/dl is usually considered high for CRP. Most infections and inflammation result in CRP above 10 mg.

The same site also implies that you can have relatively immunological blood tests ( including CRP and ESR ) and still have RA.

Its all a bit imprecise isnt it. Open to interpretation and probably also influenced by the NHS need to come up with a set of clinical criteria which gatekeeps scarce resources to some extent.

[Hidden]

There is a word missing in paragraph 4 . Please insert Normal between relatively and immunological. sos xx

[Hidden in reply to Hidden]

Thanks - I have come across this before with the blood results. You can have normal bloods but obviously still have RA and to be fair the consultant did that to me. It damps it down, not cures it, which we know. So I thinkit a case of coming to terms with the situation where you are as good as it's going to get and learn to live with it. It just confuses me about these numbers and tests. They just don't do the ESR??? But I they do do the PV (plasma viscosity) Mine was through the roof, but the last blood test I had (20thApril) they didn't test for it!!! I think I shall go and lie down with a damp edition of the radio times firmly attached to my forehead, I am dead beat now. Night night xxx

[Hidden]

my gp surgery does viscosityPv) or rather did for metho.. your gp surgey should be capable of doing this for you as well as the hospital.. same story some good./bad consultants/some good bad nurses and some good bad gps.. my gp surgery execellent serivices..cant say the same for my own hospital though. take care xx