RA nurse tomorrow for next drug

9.39 appointment, I am sure the rheumatologist said last time that I am going onto abatacept. (But I do have a head like a sieve, so could be wrong). I have only been on mxt since enbrel was stopped in July, had a major flare up for 3 weeks, but rheumy gave me the magic steroid jab, so am not too bad now. I am betting that it wont be started until new year, it being so close to xmas. Not sure if I am looking forward to the new drug or not, but, with this disease, you have to try amd try until the rightdrug turns up ..... here's hoping :)

7 Replies

  • Yeah I know how I feel, seeing Rheumy for new treatment on Friday, but in the back of my head he is gonna say I read your notes and we are wrong! Lol! I never quite accept it even now ha ha . Good luck tomorrow and I hope they give u a starting date soon xx

  • It's awful waiting for them..I'm on MTX but still waiting to hear when I'm going to start infliximub again...half the time they act like they don't believe me and I nine times out of ten feel really stupid when I come out...my lovely doctor will give me a steroid injection this weekend but sad, sad news for me he is leaving..apparrantly is he too expensive..I'm distraught..I hope all goes well for you...fingers crossed. Maryx

  • Thank you both.... I seem to be quite lucky with my rheumatology team, and they had no choice but believe me, I cried with pain when I saw them. Hope you both aresoon sorted :)

  • Hope you have a good visit and your drugs sorted soon x

  • Hi.

    Not often posted on here but I do look in quite often. I have my 2nd appt for DAS scoring with biologic nurse next week. I have been on mtx for nearly 20 months and sulpha 10 months. My consultant said my RA is grumbling so talked about Enbral. I have failed my first DAS score with 4.7 and can you believe I had 5 new joint flares within the two weeks of seeing consultant and appt with biologic nurse. I was walking really dreadfully that appt as 2 of the new joints were in my feet and nurse said you are really struggling, will give you a steroid shot after second DAS scoring. The nurse said RA is a really bizarre disease. I can see infront of me the inflammation and swelling but your crp does not show the amount of inflammation. At least that appt I had someone who could see for real what was going on. The nurse did say my consultant can over rule the DAS scoring, lets hope so.

    Good luck Lab lover.. same as you not quite sure about taking the new drug. I have tolerated 20mg of mtx really well, and must admit the cancer side of enbral is making me a little wary. ps I am a lab lover too. Jeanette

  • Hi jeanette, sometimes my cpr does not not show inflamtion either,, when I saw the rheumatologist tho, she could see all the swelling etc.

    I have been on mxt since diagnosis, 3yrs ago, also tried leflunomide with it, then the leff was changed for the enbrel...I was really worried about going in it, but I was fine, no effects at all, however it did not work as the rheumatologist wanted. Was then put onto sulf, with mxt, but it made me ill. Ppl on this group wondered why I was put onto a Lesser drug, instead of another biologic, so I mentioned it to rheumy, hence going onto something new, which, as said in my post, I think it maybe abatecept.

    I am learning not to wory too much about the side effects of all these drugs we have to take, lets face it, we could be run over by a bus, so what is the point of worrying too deep. :)

    Hope you will get sorted out very soon.

    I think everyone must love labs, lol. I have 2, Griff is a 2 1/2 yr choc, and Gwyn is an 8 mth old yellow. They keep me sane, and force me out everyday :)

    Pam. X

  • Thanks for reply Pam

    I have a yellow lab, Chester who is 9. He is a rescue, he is real lovely lad. This is my 2nd yellow one I am partial to them lol. Griff is a nice name.

    I was surprised to be offered a biologic ,rather than another d mard, to be honest. Yes don't think it is unusual to have low cpr scores, but my cpr mucked my DAS score up, even the nurse was disappointed as she said it would have been so much more straight forward it it had been 5.1. Will just wait and see. I have faith in my rheumatology unit. They have just shown the upmost respect, consideration and compassion and kindness to me. Wishing you well and hope the new treatment works for you. Jeanette x

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