'Living' with arthritis - warning...it's a long one!

Nicchick

Hi everyone!

I say 'living' as that is what we are all trying to do and yet the very people who are supposed to be helping us achieve that make it very difficult at times. This is the end of a very frustrating week for me as I had a hospital appointment with the practitioner nurse that I have seen every six weeks since the end of May. In May she agreed that methotrexate wasn't doing anything to prevent damage to my joints and that anti-tnf would be the way to go. She went off to ask my consultant, a man I have seen once in almost three years if she could put me forward for it and in 8 minutes he decided I wasn't suitable and I should persevere with methotrexate and have stronger pain killers.

I'm pretty fed up about this as...
1) He didn't examine me, in fact he has never examined me! I saw him for the one and only time last May when he prescribed the methotrexate.
2) When I asked the nurse what he had used to make this decision she replied 'your x-rays' to which I replied 'x-rays? The one's I had on referral in the Autumn of 2009?' At which point she sent me for some more X-rays...

I was also prescribed a steroid injection at this point as I was in the middle of a major flare and in sooo much pain, taking 1600 mg Brufen daily with codeine and paracetamol.

I rang the 'helpline' and left a message asking how I go about changing to another consultant and no-one called me back. I rang again 4 days later as I was about to see my fantastic GP and wanted to go through what had happened at the hospital with her and discuss the fact that amazing as my consultant is reputed to be I saw no point in being under him if he's always too busy too see me! I had a call back twenty minutes later saying that as my consultant was leaving that wasn't an issue and that I had in fact seen him three times....this is incorrect and yet this is what my records held by the hospital shows!

The nurse I was speaking to then asked if I wanted to put in a complaint (I never mentioned that) and that it was standard to see a consultant once a year. *I* know that I have only met the man once and was subsequently proved right as one of the occasions recorded *he* was off sick!

At this point my GP put in another complaint and described my treatment by the hospital as crap!

Six weeks later I was still in pain but the swelling had gone down a little and it was suggested *again* that I may be depressed - I'm not! I'm fed up with being fobbed off, lied to and passed back and forth between GP and 'the experts' I also have absolutely no trouble sleeping, I'm lucky, I know.

Six weeks later, two days ago I went again and was told that I didn't have the required number of swollen joints and when I pointed out the ones that are so swollen and give me the most trouble I was told that they don't count and are not part of the test.

I have PsA and all of my joints have been affected at some point (sometimes even my eyeballs ache!) but my hands and feet are the worst. I have a great job which means that I pick and choose what I do. Until the dreaded Arthur visited me in a dramatic fashion for the first time a few years ago I made top end soft furnishings for interior designers and expensive shops. I loved my job but when it became obvious I would no longer be able to do it I changed and now teach people how to make stuff. I had a book published last year which is on sale all over the world and a fantastic boyfriend after being on my own with my son for 13 years. He has RA and is amazing! He never moans about it...I have no reason to be depressed apart from the fact that NICE guidelines and a PCT who has recently tightened up the rules are preventing me from enjoying life.

Told you it was long, apologies!

Frustratingly Nx

frogmorton

Oh Nic

No apology necessary at all....you have NOT had a good time have you?

Sounds like they did the DAS score on you as regards anti-tnf? Am I right that still doesn't include feet? Which have so many potentially sore joints :roll:

'Out of date Xrays' eh? That woudl be enough to make anyone angry I think :roll: I take it they now have up to date ones?

Did I also read correctly that this consultant is leaving soon? I really hope so and that the replacement is far more compassionate...

You are not the first who has been labelled 'depressed' when they are just in agony and it does upset me - in fact l think we are far more likely to BE depressed when we are neglected, in pain and treated badly.

I am so glad for you that you have a lovely partner It really DOES help doesn't it? He clearly has empathy with you and you for him. Does he come with you to appointments and has HE got a better consultant???

So what's the next step for you now?

Love

Toni xxx

Nicchick

Hi Toni!

Thanks for such a kind and sensible reply

I've just got back from seeing my GP but she just says to wait until I see my new consultant on Tuesday. I get upset when I explain what has been happening so I can see why they could assume that I am depressed although I try and reassure them that it's the situation that is depressing not my finding things depressing (if that makes sense?) I have agreed to try taking an anti-depressant called sertraline which blocks pain receptors if only to stop people suggesting it!

I don't think they have a clue what it's like - I tried to explain that I get worn out just planning how I will navigate myself through events in the day. I'm about to make a cake so in order to do so I have sat down and plan to get up and down very little because of knees that give way, I can't stand because me blooming feet hurt despite taking celebrex, codeine and paracetamol this morning.

Trust me to have the wrong swollen joints! I left a message on the helpline yesterday saying that I do not want to try Leflumanide as I think the side effects both sound awful and hang around a long time after...

I have already met the new consultant as he is OH's consultant! I went along to his last appointment and to date have spent longer talking to him than to any other! He is lovely and I have (at my father's suggestion) typed out a timeline of treatment and experiences at the hospital. GP has told me to stay in his room until he has answered all the questions.

I was particularly fed-up that the consultant that has now left made a decision with long-term consequences when he was leaving so soon. That made me so angry!

I'm about to call PALs again as they haven't returned my call yet. The nurse was *good* enough to say that my involving them wouldn't affect the way they treated me - can't decide if that's good or bad yet

What are we to do eh?

Time to bake! Nx

valval

our life is in there hands i must admit and we all get down from time to time it would be hard not to with the exhaustion we cope with just every day things can be to much have left dishes till tonight as ache so much today and stomache not great so trying not to take pain meds if can help it will take some before work it sounds like the new rhummy will be good do not know about test as due to take mtx (if that right way around lol) when know what going on with stomache but wanted to say hang in there you doing all the right things and will get there good luck val

julie47

Hi Nicchick

Those buns smell good

I am sorry that you are having such a rubbish time at the moment and that you are being passed from pillar to post, with no one knowing what is best for you.

You say that you do not want to try leflunomide, I have been on leflunomide for a very long time (had ra 24 yrs but was on gold to start with) combined with methotrexate and I haven't had any side effects
I am also on celebrex and hydroxy.

I hope on tuesday the new rhummy consultant is more helpful and that you get your Pa under control soon

Love (((())))) juliepf x

Ps ......are the buns ready yet, just about to put kettle on

Nicchick

Ha ha! Raspberry and Pear cakes ok for you Julie?

I had just read your post about Leflunomide and although I am not keen due to having had tries at sulfasalazine and methotrexate in the past and I feel that three years in I should have had better monitoring and treatment not just limp from one dmard to another 'waiting and seeing' as I appear to have been doing along with the nsaids

The cake is for a soap making workshop I'm running later, lucky ladies eh?

I love cooking and although I have modified how I cook I do feel that I've lost some of the enjoyment I used to get.

After having some pretty unpleasant side effects with sulindac recently I do feel for you Val, hope you get sorted soon!

Nx

dreamdaisy

You are doing all the right things in adjusting your behaviour to cope with the arthritis, I now have to cook and iron sitting down as my knees, ankles and toes don't respond nicely to holding me up! It's a pain, literally. The time-line plan is a very good idea, I used to keep a diary but I gave up with it long ago as it just made for such depressing reading. As for the meds, I've tried sulph, meth (both sorts), lef and cyclosporin, then with the anti TNFs infliximab, enbrel and currently humira. I've had to accept that they don't cure or repair, they just prevent further damage and that has to be a good thing. It took years of trial and mostly error to hit upon my current combination of meds and it seems to be the way these things go. Hopefully this new consultant will be more clued up and interested in YOU as a person and will get some better drugs in situ for you. Good luck! DD

PS Have you googled The Spoon Theory? That is a very good explanation of how we have to pace ourselves to make sure our limited energies last.

Nicchick

Thanks DD!

I have, I'm on twitter and have an 'arthritis twin' who I have never met but who has offered amazing support since *meeting* him and he posted it a while ago - it is an excellent explanation but made my mum cry when I told her about it.

I find the fatigue part of this the hardest to cope with as I was always very active and busy. I still am but I find I am able to do less and less as time goes on and the list of pills keeps getting longer and longer!

I got so cross yesterday when the nurse (who is great and lovely) said I am a rheumatology nurse, I know what I'm talking about and I'm paid to know about these things. I wasn't questioning her knowledge merely pointing out that as a reasonably intelligent person I was aware that tramadol wasn't leflunomide and that over the last three years I had made PsA my specialist subject and I don't even get paid for it...

Roll on Tuesday...:) thanks for the great welcome BTW! Nx

dibdab

Hi Nic,

What a frustrating time you're having. If the new rheumy doesn't come up trumps persevere with PALS- it took me lots of phone calls but eventually I was able to swap rheumy's and the new one listened, made connections between my RA and constant chest infections and referred me to a respiratory consultant who is wonderful too.

Hope things work out for you soon. PS- the cake sounds very yummy-lucky class!!!!!!

Deb x

barbara12

Hi Nic
I am so sorry to hear you have been treated like this, but I am not surprised, I have had so many things go wrong with the NHS..mainly them not talking to one another that I have lost count.
I am so glad you have joined us, at least we can offer you some support, and just by talking about things, can take the weight off your shoulders and hopefully make you feel a little better.
I do wish you well with everything xx

dreamdaisy

Ye gods. In my experience rheumatology nurses do generally know their stuff but only one knew about living with arthritis because she had RA and was on injectable meth. It would take her a couple of hours to psych herself up to take it (having spent the working week happily stabbing others) but she understood the pacing and self- management involved. All the other nurses are not arthritic so only understand the theory, not the reality. DD

PS I also 'share my house with a gorilla' - that's worth a read too!

Nicchick

A gorilla DD?! Yikes....I'm intrigued!

Thank you Barbara and Deb, I am on the case and luckily my parents have just moved back from overseas to over the road....really! After Wednesday's happenings my father said he will start to make noises if nothing positive comes after seeing new consultant next week.

I do find dealing with doctors, nurses and receptionists much more stressful than any other element in my life which is ironic as they are always telling me that my job and lifestyle are causing me stress - they aren't!

Hope you all have a good weekend and thanks for listening! Nx