Newly diagnosed...and about time too!!
I had my appointment today with the rheumatologist and have come away with a positive diagnosis of rheumatoid arthritis. It's not come as a shock as you probably all diagnosed me long ago lol, I know I did. I already knew I had positive rheumatoid factor and raised esr however today I found out my anti ccp is 160 which I'm informed is a considerably high figure. All in all with pain in my feet, knees, hips and puffy sausage fingers I can safely say this rheumatologist has hit the nail on the head. I've come away armed with an abundance of booklets and information sheets. I was given an immediate steroid jab in the bum..not too bad and suppose I'll have to get used to it anyway. I'm starting Methotrexate at 7.5mg moving onto 15mg in 3 weeks and folic acid 5mg once a week. I'll be getting an appointment to see the rheumy again in 6 weeks time. I'm to have weekly blood tests for now but can't remember what he said after that as my brain is mashed! I suppose now I'm a fully fledged booklet holding member of the club. Still taking it all in but then I've had almost a year to start coming to terms with this day.
An official welcome to the club, although you would be welcome one way or the other.
It is good to be sure of a diagnosis, because you can imagine all sorts when you don't know, hopefully the mtx will be well tolerated by you, I had no problems so far, I have taken up to 20 mgs per week, currently on 17.5 mgs. well I suppose, I do feel quite tired for about 24 hours after dose, but no nausea TG.
Good Luck, Gina
Thanks Gina, it's promising to hear that you're getting on well with it. It'll be worth it to end up with respite from the pain though x
well done on finally getting it diagnosed, at least now they can give you the right meds to get you sorted.
take care x
Thanks Scouser x
Well done paula,its amazing how you feel when you know whats wrong. At least you will soon start to feel better. Everything hopefully will soon look rosy for you.
Its great when you get a good doctor. I bet you feel like you have won the lottery.
Take care, love sylvi.xx
I really hope the treatment works Sylvi. My doctor was lovely and I didn't need to show my pictures or anything. Just got to decide on the best day to take the meds now and keep positive. Wish I didn't have to worry about appealing the ESA on top as I just don't know where to start. x
Don't worry about esa as it will come in your favour. It will take time i can tell you. Just let it go until you hear from them.
Well Paula, not that anyone would welcome a diagnosis of RA of course, but I'm very relieved for you because as you rightly say it was certainly very obvious to me and I think to you and to your GP - and I knew you had a positive rheum factor too.
So welcome to the finally diagnosed club! MTX has been good for me re joints - although my ESR is still sitting at 42 after six months and I keep getting silly side effects to the MTX so am glad that I've got Plaquenil/ Hydroxy to take now as well. I've had to stop at 15mgs and it took a while to get there. Tried 17.5 but liver got raised again so I obviously don't tolerate it that well.
But I've never had the hair loss, nausea or mouth ulcers that others complain of - just extreme tiredness, low moods and funny spots and skin rashes. I think the tiredness and low moods could also be part of the RA though so I'll just blame the skin stuff and really, compared to the joint pain it's not something I'd quit MTX for.
So very good luck to you and expect no side effects and a huge improvement in pain levels in a few months time - here's very much hoping for you. We will look forward to regular updates from you now you feel part of the gang (although you were anyway as Gina rightly says)
I think it's a bit shocking that you've had to wait so long but at least now you are being treated royally as in six week follow up - I'm now six months on from diagnosis and on 2 dmards - but have still not seen a specialist nurse or my rheumy and have been given no date or idea when I will see him again! TTx
Thanks Tilda, I agree that it's awful how long this has all taken. It certainly didn't help being discharged by the first rheumy I saw in December, putting me back to the end of the waiting list. I just hope not too much damage has been done in the interim. I'm hoping for a side effect free time on MTX but like all on here am concerned about the risks and side effects. I can't believe you don't even have access to a specialist nurse, that's a disgrace. It's good that you are improving though with your "buffet" of dmards but it's about time you got an appointment date at least! One thing this whole episode has taught me is how underfunded rheumatology appears to be. Were you given any steroids? I'm hoping the jab doesn't make me gain too much weight as I've been trying so hard to lose. I'll just continue counting my calories and hopefully all I'll gain will be water weight. It's been an emotionally exhausting day but I'm sure you felt just the same when you were diagnosed.
Yes I did feel just like that when I was diagnosed - and as with you it took a while although I wasn't dismissed out of hand as you were - which was truly disgraceful! I really hope it hasn't led to any permanent damage for you - I was told somewhere that there is a two year window from onset to lasting damage.
I don't think my rheumy is as forthcoming as yours sounds although he was perfectly polite and genial with me both times. I had the stong feeling he didn't like me being as informed as I obviously was even back then - and get little sarky bits from his emails to my GP about "patient will no doubt make up her own mind about which dmard to try next"etc. This really frustrates me because as Polly said somewhere there is evidence to the effect that well-informed patients do better than those that just take it all lying down. And if he was sticking to the guidelines and seeing me more frequently then I wouldn't have to be quite so educated about all the drugs available. It's such hard work and so dispiriting that I'm really glad for you that you won't have to be steering your own ship as I have to constantly. TTx