Is this a load of tosh ?!

Jo90
Jo90 Member Posts: 68
edited 6. Feb 2013, 05:13 in Living with Arthritis archive
Evening all.
I was just hoping I can call on the collective wisdom here to understand the logic of my new rheumy consultant.

I have seroneg inflam arth (have had it for about 12 years) but only diagnosed 3 years ago. My main problems are in my knees, which balloon with a steadily increasing frequency.

I had a rheumy consultant for the first 2 years who was great, and my meds (hydroxy, plus naproxen and omeprazole) were doing ok, however, over time they haven;t been enough. I was prescribed Sulfa back in October, but had a pretty nasty time with it and after 2 months of persevering, was advised to come off it. This brought me to my appointment with the consultant yesterday. We had something of a 'debate' (well ok, I bl''dy grilled him) about taking the next level of meds. He told me the next logical step is meth, but he needs more evidence of my inflamation. My argument was that as I am seroneg, he won't be able to have any obvious reference point, except if he had seen it. He then pursued the line of me having my next flare and getting an appointment with him pronto - all in the name of evidencing to him, so that his backside is covered for prescribing meth (or if he is not available, taking pictures ?!). I asked him what the critical factors were (according to NICE - as he quoted them at me) to trigger it being prescribed for a seroneg and got a very woolly answer.

Can someone wiser and more experienced than me tell me if this is reasonable or normal practice ? Or, should he be able to work from my articulating the impact of how my flares are - rather than seemingly throwing into doubt what my experience of my condition is ? :?

Thanks

Jo

Comments

  • stickywicket
    stickywicket Member Posts: 26,176
    edited 30. Nov -1, 00:00
    I'm not quite sure, from what you write, if it's you or your consultant who wants you to take meth. Nor do I see why he should need to 'cover his back'. Assuming that you want the meth and he wants the evidence, and given that he's suggested you make an appointment quickly when you next flare, could you, in the meantime, keep a diary and also take photos of the swelling?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • salamander
    salamander Member Posts: 2,028
    edited 30. Nov -1, 00:00
    Hi Jo90

    I'm slightly confused about your post. I wonder why you didn't get mtx in the beginning, as I did. I'm seronegative too. That was the first dmard they put me on. As far as I am aware, the prescribing for seronegative is more or less the same as for RA, apart from one infusion which doesn't work as well but I am treated as having RA and that is my diagnosis now.

    It's not just the RF levels in blood they look for but also ESR and CRP and they will both show inflammation. Also, as you say, swelling in the joints. My consultant feels my joints at every visit and it is quite obvious when they are swollen and painful.

    I'm wondering whether he is questioning your diagnosis otherwise can't see any reason for not putting you on a dmard - I take it you aren't on anything at the moment and that goes against the prescribing protocol.
  • Jo90
    Jo90 Member Posts: 68
    edited 30. Nov -1, 00:00
    Hi Salamander and SW and thanks for the replies so late in the day.

    (Sorry - I have just re-read my first post and I failed to explain that this is a new rheumy consultant - hence the first time he has seen me.)
    The mtx was the consultant's suggestion, I have no preference for a specific drug, but was under the impression that there was a 'next step' drug that would be prescribed as the situation with my flares is that they are escalating.
    The reason I mentioned 'covering his back' was that he specifically mentioned that he would need clear evidence of my level of flare before he could prescribe mtx, given the potential side effects. It was his specific comment that he needed to be able to substantiate prescribing mtx.

    I am keen to damp-down any subsequent flares because an additional impact that has been attributed to my IA is costochondritis that has caused such severe breathing problems that I have been taken into A&E twice in approx 12 months, and I am very keen to avoid a repeat of this !

    Just to clarify, I am still taking hydroxy, and am quite happy to take pictures of my knees when they next flare, but am somewhat disappointed that I appear to have to demonstrate the problem before I can get started on next-level meds.

    Jo
  • salamander
    salamander Member Posts: 2,028
    edited 30. Nov -1, 00:00
    Hi Jo, I can sort of understand his position. He doesn't know you, hasn't seen your joints when they are bad and doesn't have blood results to justify prescribing mtx. It is a very strong drug.

    If things are not too bad at the moment, I would do as he says and get yourself to the hospital as soon as you have a flare. You are taking a dmard to protect your joints, so that is a good thing. As far as I am aware, NICE prescribing protocol is to get people on dmards within 3 months of diagnosis so you are covered in that respect and so is he!

    When my joints flare I have to either an injection into the joint or a systemic steroid jab. The medical staff can see without me even telling them I am worse because I generally can't move! So I can't see you having a problem getting acknowledgement when that happens.
  • stickywicket
    stickywicket Member Posts: 26,176
    edited 30. Nov -1, 00:00
    It does sound as if he has some doubts about the diagnosis and, to be fair to him, hydroxy alone doesn't appear to be a normal 'first treatment' so maybe your original consultant had reservations too. I do understand your breathing fears (all too well!) but it would be a big step to go onto meth if it wasn't the right treatment. Far better to get things right even if it takes longer. I'm with Salamander. Take him at his word re coming in when flaring and take it from there.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Jo90
    Jo90 Member Posts: 68
    edited 30. Nov -1, 00:00
    Thanks Salamander and SW for the considered and rational input. I think I was just a tad frustrated still yesterday,by what felt like an unnecessary delay to treatment.
    I will hold fire and provide him with the evidence he needs when I next flare.
    Thanks,
    Jo
  • barbara12
    barbara12 Member Posts: 21,053
    edited 30. Nov -1, 00:00
    Hi Jo90
    I am sorry I cant offer any advice, but I do wish you well with whatever meds you get, they do seem to make life even harder.....do they not understand you do not want the flares but something to stop them..
    Good Luck
    Love
    Barbara
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    Iv had much the same problem, i have seroneg, well I know I have and a rheummatoloigst told me it was reasonable to say it was that, but I still dont have a firm diagnosis because the current rheummatoloigst said that none of my results have shown anything so they havent beeen able to document anything. As my bloods have always been normal which is common with my type of arthritis.
    Im not sure what type of seroneg you have as bloods can sometimes still have raised inflammatory levels, but in my case I haven't had.
    I have taken photos of swellings and yet he still doesnt seem to believe them since he hasnt seen with his own eyes!! But yea I would take plenty of photos and try to collect evidence.
    I know with enteropathic arthritis the ECCO guidelines state that you need pain and swelling in joints. Bloods and scans can often be normal with this type which noone seems to get!!! :x
    For arthritis you have to have swelling else its just arthralgia which just means pain.

    I am on methotrexate even though he still hasnt agreed with my diagnosis, -mainly because i responded to steroids and so the last rheummatoloigst said it was reasonable to say it had confirmed it and do a trial of methotrexate. Also Iv actually found that my GI doc knows more than the rheummatoloigst. Im slowly getting there.

    You could always ask for a second opinion. but my advice, take photos! good luck! I know its a nightmare, i totally agree with you. Its been 9 months of agony trying to get someone to take me seriously :?
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    just wondering. the times you went to A and E, did they not do something to document swollen joints then?
    its rubbish when u have a good rheumm and then get a new not so good one!
  • Jo90
    Jo90 Member Posts: 68
    edited 30. Nov -1, 00:00
    Thanks Barbara and Lizzy
    Lizzy, you seem to be my arthritis twin !! Even when I have swollen knees (or the costo) my bloods show no abnormal responses and appear normal. Very frustrating.
    When I have had to go to a&e for my breathing, they hear my account of being under the care of rheumatology,dose me up with morphine,check I'm not having a heart attack and then tell me to go and see my rheumy. That's as far as they take it.
    It's something of a relief of sorts to hear I'm not alone :)
    Jo
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Photos may not be enough to show what's going on - I used to measure my knees. My trouble began in my left knee (which used to be just over 13 inches in circumference). By the time people were taking me seriously about the inflammation it was nearly 20" and by the time I got into surgery it was 27". All the swelling was above the knee cap, it looked as though a cauliflower was stuffed under my skin.

    Good luck and keep fighting your corner. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Jo90
    Jo90 Member Posts: 68
    edited 30. Nov -1, 00:00
    DD - brilliant and extremely sensible suggestion - many thanks. Tape measure will be deployed, the irony is, now I need to have a chuffing flare up - where are they when you need them ?!
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    It'll arrive, it usually does and always when you don't need one. If you have a good social event planned for the near future (a party, wedding, meal out or whatever) that's the required trigger. :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    Just read your posts
    The Rheumys have to follow nice guidlines
    These are on internet & easy to access
    They have to be seen to try everything possible if it does not wrk then they go down the line with the TNF or is it TFN I never can remember but these drugs cost thousands & thousands of pounds
    If the other meds work then they dont need to go down that route
    As with many of the aggressive medication they dont want to start you on them if they dont have to
    Im on this path as started Sulpasalazine with little effect so a year down the line Ive just started methotrexate hoping this will work but who knows.
    As we all know there is no quick fix with arthritis & with over 200 types it is difficult to get a quick diagnosis
    Ive had OA for 10yrs now & last year was also diagnosed with Inflammatory Arthritis
    It is certainly a most annoying conditon & can take many many years to get it under control
    Its also difficult for people to understand when looking so well how bad I am
    As you all know pain 24/7 is no party in the park
    Thank God for this site as I think I would have gone round the twist by now
    Keep strong & fighting
    Maria
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