first appointment with the rheumy nurse , since starting anti tnf

hi ....

yesterday was my first appointment with the rheumy nurse , since starting anti tnf , back in january this year .. it soon came clear it wasnt like any other normal visit ,, because whilst sitting in the waiting room ,, i were handed some more forms to fill in .. i clicked at this point i were going to be assessed on the performance of the drug and my well being ,, has the forms were the same forms id already filled in before starting anti tnf ... basically ,, questions on your well being , how do you find putting on socks / tights .. ( ive never tried putting tights on ) i dunno , can imagine its abit tricky tho . how difficult do you find getting up from a chair ? things like that ,, you just answer easy or difficult on a scale 1 meaning easy ,,, 10 meaning difficult ..

once id finished filling the forms i were called to see the nurse ,, she took one look at the forms ,, then compared them to the forms id filled in before anti tnf .. and said yes great improvement .. no problems there then .. we then talked about , how i were feeling and if i had any problems with the drug .. none whatso ever and ive never felt better ... were my replies .. now onto the bloods .. i knew this would be good news ,, not only because i already knew some of the results from the blood test , but mainly because how i feel in myself .. your body does tell you when something is working or not .. you dont need proof , but i guess the rheumy team do .. i knew all was good ,, when she looked at her computer screen and went WOW .. oh WOW ... your esr and crp are both reading normal levels .. when we both looked , i saw my crp level at xmas was 78 , and is now 6 ..

so that was that really .. she said youll have no problem ,, with being able to continue on the treatment .. and we`ll see you again in 3 months ... but just wait , because the consultant said he would like to see you ," my rheumatologist " at the hospital .. i went on to ask if i should still be taking MTX at 8 tablets ( 20ml ) per week .. although we dont want to rock the boat , when things are working so well ,, so lets reduce it slowly ,, as from now , take 6 ( 15ml ) for one month .. then drop it to 4 ( 10ml ) .. may then we will be seeing you again and we`ll `look at it again ... at this point the rheumatologist walked in .. asked me how i was ? i said , fantastic doctor .. he shaked my hand and said ,, i am so pleased .. then went back to his work .. i thought i were gettting another long list of questions ... but it seems all he wanted were to say hello .. im so lucky .. ive got the rheumy team ever ...

i know the anti tnf , can just stop working at any point , and knock you straight back to square one and all the risks involved taking fairly new drugs .. but anyone whos being offered or thinking about anti tnf . go for it !!! .. its worked amazing for me ,, so far ...

15 Replies

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  • Wow Andy! That is fantastic news and I am so pleased for you!

    And sounds as you have a faboulous rheumatology team behind you as well and that is so nice to hear.

    Long may it continue for you.

    Tillyx

  • Forms, what forms, mine never asked me to complete any before or after, they just do examination of bloods bi-monthly, and body every three months at the start to six monthly and now back to three monthly, as I have had to come off earlier in the year and things are gong according to plan.

    However I do agree with you, when you say you know you are putting good stuff into your body, as I feel great within. So different than the mixture I had before.

    Long may it last for you, take care, xxx

  • Should be 'not going according to plan'.

  • sorry to hear , things are not going to plan .. georje ...

    i think , its maybe down to the type of arthritis ,, your PSA i believe .. where im AS .. i had a physio assesment before aswell ,, where different measurment where taken .. neck movement / bending over and from side to side .. all measured in different ways .. i think with A.S you really after prove the treatment is working , otherwise its taken off you ..

    saying all that ,, with AS , you dont after go through all the different DMARDS before starting anti tnf .. you only need a daignosis ..

  • Andy i am so happy for you, :))))))) I have just come back from my appointment after having 2 more steroid injection, i'm a bit tied so i will blog later to let you know how i got on, But fantastic news XXX

  • also when i went to oxford a few months ago they also ask me to fill out a form like that, but they never went though it with me thou, they will properly keep it in a file for future references, Take Care XXx

  • That's great body just read your blog. Fantastic news . I am so chuffed for you.

  • That's great news Andy yes I had forms to fill out before I started embrel and was told I will have more to fill in when I go back to hospital love Karen x

  • Happy happy ..... So pleased for you Andy how amazing you deserve it :))) ..Just love the good days and hopefully they will last a long time C xx

  • Yayyyyyy !!!!! What a fantastic blog !!!!! So lovely to read when things are going so well for someone and keeps some of us full of hope and positivity .:)))) you seen so cared for too... Well done and good for you,keep this happy positive blogs coming,you have made my day lots of love Michelle xxx

  • Andy, it is so nice to hear when something is going right for a change. Well done you.xxx

  • fab news Andy long may it continue for u xxx

  • Sounds good to me long my it last for you. Its always good to hear good news xx

  • Great news Andy ;-))

  • great news !¬!

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