Appt Advice

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mattbissett
mattbissett NonActiveMember5yrs Posts: 5
edited 29. Sep 2010, 16:31 in Living with Arthritis archive
Hi everyone, new member. I have been diagnosed with PA. I have been on Metho and now currently on Leflunomide with Naproxen. My right hand is very sore and swollen and the joints on my left hand are going the same way. Various other joints v sore, but the hands are the worst. My consultant even took photos! He has suggested biological treatment might be a better solution, but I have to have an assessment, and if I don't score high enough I might not be elegible for the treatment? Anyone been thru this and can tell me what to expect. Also Naproxen not working any other suggestions :?: Thanks Matt

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  • c4thyg
    c4thyg NonActiveMember5yrs Posts: 542
    edited 30. Nov -0001, 00:00
    I've also got PsA and am now taking the wonderful biological drugs. From what you've said you shouldn't have a problem qualifying. Every area is slightly different but as you have PsA rather than RA you only have to have one assessment (as there are less suitable treatments for us). In my area I qualify if I have 3 or more inflamed joints at the time of assessment. I had 27 so it wasn't a problem! Every knuckle on your fingers and toes is a separate joint so it sounds like you have more than 3 affected joints.

    The assessment is nothing to worry about. Just be honest and don't try to be tough about it. Your rheumy nurse isn't trying to catch you out, s/he simply has to fill out the paperwork for NICE.
  • mattbissett
    mattbissett NonActiveMember5yrs Posts: 5
    edited 30. Nov -0001, 00:00
    c4thyg wrote:
    I've also got PsA and am now taking the wonderful biological drugs. From what you've said you shouldn't have a problem qualifying. Every area is slightly different but as you have PsA rather than RA you only have to have one assessment (as there are less suitable treatments for us). In my area I qualify if I have 3 or more inflamed joints at the time of assessment. I had 27 so it wasn't a problem! Every knuckle on your fingers and toes is a separate joint so it sounds like you have more than 3 affected joints.

    The assessment is nothing to worry about. Just be honest and don't try to be tough about it. Your rheumy nurse isn't trying to catch you out, s/he simply has to fill out the paperwork for NICE.

    Thanks c4thyg. Must admit, getting v fed up and feel bloody useless! I have to get my wife to open a bottle of drink etc, 6ft but no strength in my fingers at all! Got my appt mid Oct so hopefully I can try new meds and they work?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Hi matt, and welcome to the forums. I too have PA, tho mine started in my left knee and I rarely get the P bit: I buck the trend in so many areas! There are quite a few anti TNFs about, I am on my third lot. They can be a miracle cure for some and I sincerely hope you fall into that category. One of the many things you will discover as you read thro various posts is just how much variation there is from person to person in the way that they react to the drugs, and the effects that the drugs do or do not have on each individual version of arthritis. If more of your joints are being affected, and if you have tried more than three 'traditional' treatments without success, then in my area you are presented for an anti TNF, or biologic as they are also known: I think it does vary from area to area tho. These meds are pricey! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mattbissett
    mattbissett NonActiveMember5yrs Posts: 5
    edited 30. Nov -0001, 00:00
    Thanks DD, I hope your right?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Umm, I'm not sure I understand your question. Is it 'I hope you are right' or 'I hope you are all right?' Sorry to be dense, just not having a good day. My apologies. :oops: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mattbissett
    mattbissett NonActiveMember5yrs Posts: 5
    edited 30. Nov -0001, 00:00
    :oops: it is hope you are right. Cos the meds are expensive, consult said I might not qualify. I suppose I'll find out soon enough, appt 19th Oct.

    Sorry to hear your having a bad day, I must admit looking at this forum, makes you realise a lot of people are worse off and that I should stop moping and moaning! I hope you feel better tomorrow.
    Matt
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    OK, I hope I can help. As I said before, in my area one has had to have tried at least three 'standard' treatments, resulting in little success, to be considered for an anti-TNF. I have tried methotrexate, leflunomide and cyclosporin, all supported by sulphasalazine and two kinds of anti-inflammatories. My first anti TNF fizzled out after about 8 - 10 weeks, my second tried to fry my liver and the third has been successful in that inflammatory markers are in single figures, and have been from the off, fifteen months ago. I have been squeezed in by my rheumatologist as a 'trial case' for all three, that was the only way she could get funding for me. The 'qualification' criteria seem to vary from area to area, so I do wish you luck. For some they work miracles and I hope you are in that league. Oh, and it's not a competition here - we all suffer to varying degrees, and we all know the misery of it. This is the place to come and moan and whinge and whine - given the possible size of you (a proper man, I love rugby boys!) it must be even tougher to put on the brave face. I think you are on the tall side, and that is one big chest! You even beat me! You take care, keep in touch, and thank you for your good wishes. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 NonActiveMember5yrs Posts: 7,099
    edited 30. Nov -0001, 00:00
    Hi Matt
    Just wanted to say welcome to the forum.....sorry not much help
    I have OA but there weill be plenty that will help

    Love Hieena
  • frogmorton
    frogmorton Member Posts: 30,443
    edited 30. Nov -0001, 00:00
    Quick welcome form me too Matt :D

    Hello! :D

    From

    Toni x
  • Wonkylegs
    Wonkylegs NonActiveMember5yrs Posts: 3,504
    edited 30. Nov -0001, 00:00
    HI Matt

    just seen your post and wanted to wish you luck with your appointment.

    I have been assessed for Anti-TNF treatment, having had Methotrexate for many years, and having added in Leflunomide which unfortunately I seem to have had an allergic reaction to :roll: Mind you, mine is RA rather than PA, so the system is a little different I believe.

    I had to have two different assessments in May, and then the nurse had to go away and apply for funding. IN the meantime I had to be tested for latent TB, which these treatments can apparently 'wake up. so if you are positive then they treat you so you don't get ill. Fortunately it seems that I won't have to be treated, though it was looking likely for a while :roll:

    I am seeing my consultant again on 20th October, so it must be the week for anti-tnf decisions :lol::lol: and I think they will decide then what time-scale things will go over.

    HOpe you get a helpful PCT who agree that you need the funding.

    Oh, and if Naproxen isn't working well enough for you, has your GP suggested changing to another NSAID? just asking because I had taken several different ones, most recently on Ibuprofen for a long time, and have just begun taking Naproxen myself. My GP said that sometimes just changing from one NSAID to another appears to help out at times.

    anyway, good luck!
    WONky

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