my first appointment with my rheumatologist..

[notts]

after waiting 2 months to see a rheumatologist.. last week i got my first appointment . He asked about family history, he really felt that it was RA. He said that he wanted to put me on some medication ( methotrexate ) .. that should make me feel better, while he did some more testing. ( more bloods ) He told me to trust him, that he would help me feel better. That the medication would get me back to my old self again and that he would see me again in a few months time with the test results.. on my way out , he gave me a gentle hand shake ,, an said dont worry ,, we will make you feel better ,, i promise .. just give me time ..

i noticed during the appointment the rheumatologist appeared very pleased , that i had been doing alot of reading about RA . he asked me if i had seen a treatment called secukinumab with some new trials ??? i was clueless and didnt understand a word he was talking about .. when i asked him to explain more .. he just said , lets see ,, its still early stage . this is something we may discuss further down the time line .. is anyone here taking secukinumab ??

[Hidden]

This is so new it is virtually on named patient basis has been used for psorasis succesfully and AS not much info in its use for RA but it is licensed this drug looks promising.

[notts in reply to Hidden]

hi summer . thinking about it , i am probably completly wrong . when i got back home i could nt remember what it was called . i just know it began with S and ended in mab . so i used google to search . am now thinking it could be simponi , he did say two names . so it could be, and i am wrong .

i am starting the chemo drug as from next week . i am not looking forward to that

[sylvi in reply to notts]

If it does work then don't worry about it. You'll die if you worry and you'll die if you don't,so just go for it,anything that will ease the pain i'm all for it. I have just taken 4 pain relief pills and i am now sitting. Take care.xxxx

[Kathyfitz12 in reply to notts]

Please approach Methotrexate with an open mind. I refused to take it for yeasr and needlessly put up with a lot of pain. 3 months after starting taking it - I was 99% painfree and only had a little nausea which soon passed. Good Luck with it & I really hope you are one of the many thousands of people taking it suceessfully.........Kathy

[Josie2]

Oh how i long for an understanding consultant/rheumy team.

Hope your meds kick in soon.

Jo

Xxxxx

[shirlthegirl]

Hi Notts, well that is really great that you have had a great experience with your first appointment, It's great that he has started you on the meds asap, I have to agree with Josie, Next time you go ask then to write it down for you, then you can check it on the internet, that's what i have done in the past, because i can't understand all them medical term neither, Take Care xx

[Hidden]

Hi Notts. Your rheumy consultant sounds great - that is one very big plus because some are not. Kindness is pretty good and for him to seem pleased that you are informing yourself about RA is really excellent and quite unusual I feel. Some seem almost cross that we have made it our business to research what is going on with us and the drugs too.

The chemo drug, as you call it (MTX as its known on here) is generally well tolerated and works like magic for many so keep an open mind. Hopefully you will be feeling much more normal again within 3-6 months. For many people, including me, this stage you are at now is the worst. Things will improve as you learn more and come to terms with it all. Good luck and welcome to this site. Tilda x

[Hidden]

simponi not knew but there is also a new drug called seckunimab simponi is golinumab

[Hidden]

im sorry typo simponi is goliniumab not so new v expensive there is a new drug called seckunimab and if he mentioned the words new and trial he probably meant this one

[earthwitch]

The name of that drug makes me pretty sure its another anti-tnf drug, and they can be absolutely miracle drugs for folk with inflammatory arthritis. They are incredibly expensive (around £8000 a year) so you don't usually get offered them until you have tried a load of other cheaper drugs. If he is talking about it now, then it sounds like he is wanting to put you into a trial that is running at your hospital. I'd jump at the chance! Especially as there has been enough study on the other anti-tnfs to make me realise that the actual risk of bad side effects is very low.

[Victoria-NRAS Partner Moderator NRAS]

Hi Notts

This drug is so new it hadn't come across our radar yet! If, as Summer said it's mainly being trialled for other conditions at the moment this might explain it, and we'll have to wait and see if and how it might be used in RA. It sounds like the consultant was just mentioning it as a new advancement because they knew you'd been reading about RA, but then didn't go into detail because it's not something that would be considered for a newly diagnosed patient at the moment, other than on a trial.

Just to clarify what Earthwitch has said, this isn't an anti-TNF. It targets something called IL17A. It does get a bit confusing when the names of the drugs are all quite similar, but the 'mab' part of the word is not related to whether or not it is an anti TNF drug.

If anyone wants to look this drug up, the correct spelling appears to be: Secukinumab

Kind regards

Victoria

(NRAS Helpline)