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Newly diagnosed...and about time too!!

Posted by paulywoo

2 May 2012

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.

Paula x

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31 comments

Gina_K Volunteer

2 May 2012

Hi Paula,

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

paulywoo

2 May 2012

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

scouser

2 May 2012

well done on finally getting it diagnosed, at least now they can give you the right meds to get you sorted.
take care x

paulywoo

2 May 2012

Thanks Scouser x

sylvi Volunteer

2 May 2012

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

paulywoo

2 May 2012

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

sylvi Volunteer

2 May 2012

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.
sylvia.xx

TildaT

2 May 2012

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

paulywoo

2 May 2012

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.
Take care
Paula x

TildaT

2 May 2012

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

Loret

3 May 2012

Tilda, I read something yesterday that instantly brought you to mind. I had received my new supply of Folic Acid, and reading the accompanying info. Serious side effect listed, first: is skin rashes! Do you suppose it isn't the MTX, but the Folic Acid?? You are just so fascinating a case

Lxxx

TildaT

3 May 2012

Well that's a thought Loret - but I don't take the folic acid on MTX day or the day afterwards (Wednesdays) so it would be a bit strange as the rash arrived on the Wednesday and was worse this morning prior to my taking the FA? Also I've been taking 5 per week for 5 months or so and only got the rash a few weeks ago and then again this time. But I'll bear it in mind as yet another possiblity thanks for thinking of me anyway Loret - I don't feel very fascinating just now to be honest. TTx

Loret

3 May 2012

! We'll just keep on plugging along!

Julie56

2 May 2012

It's good that you know for sure finally Paula

A diagnosis none of us want but you can plough on now with help of your docs and hopefully feel better in the future. I remember last November, after waiting for a for diagnosis, that I felt alternately numb, relieved, spaced out and just plain wierd for a while - it was the last thing I expected on that particular day as they'd always seemed undecided about me! Anyway, take your time, read up even more than you probably have already, and keep coming in here to let us know how things are.

Julie x

paulywoo

2 May 2012

Thanks Julie, it is certainly a day of mixed emotions. I'm already ploughing my way through lots of information. I'll certainly be keeping in touch. There's no getting rid of me now I'm a member lol x

TildaT

2 May 2012

Oh yes and I also wanted to say that yes I had a steroid jab back a year ago while I waited for my first rheumy apt (it then masked the symptoms of course!) and took Prednisolone in October for 2 weeks at a high dose when I had a bad flare up. Hope it works wonders for you! TTx

helixhelix

2 May 2012

Yes it is a lot to take in, so give yourself time to adjust. I found I was all over the place emotionally once I got a diagnosis as happy to have a name to put to what was wrong with me, but also quite scared. I started on MTX and it worked wonders, and without side effects after the first few weeks. I'm still on it, but have just add other drugs too. I've also had a number of steroid jabs and they've never affected my weight (unlike the tabs which make me fat and nutty).

Hope it all goes well for you now. Take care. Polly

dickfend

3 May 2012

Hi Paula, Glad at last you have been diagnosed. It gives you some relief that you know now what is the cause of your discomfort. I have had RA now for 40 years and have had had my wrists stabilised and my shoulder and elbow operated on. Been on numerous number of different drugs over the years, but are now on 20mg Methotrexate, folic acid, Naproxen and Anti-TNF infusions every 6 weeks. I can assure you that within reason my discomfort in under control and I feel great most of the time. I do have flare-ups and other mobility problems, but your pain threshold does increase and your body accepts it as the norm. Always remember that there is help out there and whatever the next problem, there is someone and something to help. Promise!

It is very daunting, and worrying when you are first diagnosed. I know how I worried that I would end up in a wheel-chair or bed-ridden but medical science has come a long way and continues to progress.

Take care and don't worry, it will be fine.

Brian

paulywoo

3 May 2012

Brian, you have really been through the mill and it's inspiring to hear you being so positive. Perhaps that's the secret of living with this. Thanks for your kind words and I wish you well in your treatment.

Paula x

tiger

3 May 2012

Hi Paula, I am glad that they have finally come to a definate diagnosis, at least they can get on with treating you properly - disgraceful that you have had to wait nearly a year for it. I take MTX initially by tablets and now by injection and am pleased to say that I don't suffer any side effects apart from feeling shattered the day after taking the MTX. I hope that you start to feel an improvement soon. Take care Wendy xx

paulywoo

3 May 2012

Thanks Wendy x

Debbie50

3 May 2012

Hi Paula
finally you can get your treatment started. I was diagnosed last July and started on Hydroxy but it did not agree with me. I then went onto MTX in Oct last year taking 10mg by tablet form. Unfortunately I could not sustain the side effects, really bad nausea and fuzziness in my head along with extreme tiredness. Anyway started on injections 15mg in December and the side effects did reduce. I do get nausea and mouth ulcers along with some spots (damn!) but i think my system must just be susceptable to side effects as lots of us don't get them. On a positive note the MTX does work so ti does outweigh the side effects. I am now self injecting which is much better as don't have to go to hospital every week. Anyway good luck and keep us updated on how your getting on.
Deb x

paulywoo

3 May 2012

Hi Deb, my consultant did say he would switch to injections of mtx if the side effects were bad but fingers crossed it all goes well. I've got the usual fears about hairloss and nausea but I've read the threads on here about these. Mouth ulcers and spots sound nasty, is that an acceptable side effect? Good luck with your treatment and heres hoping you continue to improve x

magglen

3 May 2012

It is a disgrace to have to wait long to see a rheumatologist as early treatment can prevent joint damage. I had to go privately in the end but by which time my hands and feet were deformed. Not too bad as I am old but terrible for someone younger. however I am thankful that there is good medication about. In my nursing days people with RA were wheelchair bound

paulywoo

3 May 2012

I went private too Magglen as it was taking forever to get any help. It's a horrible disease whether young or old and I hope your treatment is working well for you x

Victoria-NRAS NRAS

3 May 2012

Hi Paula

Pleased you now know for certain what you are dealing with. It makes it easier, as you already had the symptoms, so the diagnosis as you say wasn't a shock, but now you know that it is RA and can get an understanding of what to expect.

Regular blood tests are standard when you are on methotrexate. They will be monitoring to see how well the drug is working by looking at your inflammatory markers, but also monitoring you for side-effects, for example with liver function blood tests.

There is always a lot to take in during your consultations, especially the first one, so if you have any questions that you feel you forgot to ask, or would like to talk anything through in more detail please feel free to call the helpline between 9.30-4.30 Mon-Fri on 0800 298 7650. We'd be more than happy to speak to you.

In the meantime I'm really pleased to see how much support you are getting on here!

Kind regards

Victoria
(NRAS Helpline & Information Coordinator)

paulywoo

3 May 2012

Thanks Victoria, I'm sure I will be in touch for some advice very soon once the initial shock has died down. There was a lot to take in during the consultation but I can honestly say none of it came as a surprise thanks to this wonderful community. I'll start reading through all the "Newly Diagnosed" section of the website tomorrow as I didn't want to tempt fate and go there until my diagnosis was official. I'm truly touched by all the support I've been offered. x

maax

3 May 2012

Hi
I am also newly diagnose after 12 months of extreme pain and unable to walk been through every possible diagnosis constant hospital appointments and became very frustrated when no one semed to be listening to how much pain i was in yes it was a shock and im just trying to find info. have started sulfalazine and prednisolone this week and fingers crossed i get some pain relief as i am going to Turkey 14th May to get married and the thought of not been able to walk is stressing me out. I have just joined this site and hope to meet others like you who are still in shock and confused with all the different medication blood tests etc. The one thing i will do is stop smoking does not seem like an option anymore.xx

paulywoo

3 May 2012

Hi Maax, sorry to hear you have been going through this too. This site is a marvellous source of information and the people on here are all lovely. I hope your medication works for you too so you can enjoy your wedding. I think stopping smoking is a brilliant idea as your body has enough to cope with fighting the ra. I've been on a real health kick since January and it's the best thing I could of done. It's given me something to focus on and it feels good to be in control of something. Good luck with your treatment and let us know how you are progressing. I look forward to seeing the wedding photos x

maax

4 May 2012

Hi Pauly

Thank you for your kind reply and i will get on that health kick after my wedding and stop smoking. ive been on slim fast for 3 weeks and lost 8lb so thats a good start. I will def post some wedding pics for you all to see. take care xx

bradford

5 May 2012

Hi Paulywoo
Im so pleased to hear you have been diagnosed and at least you can deal with it and know exactly what to do to help your symptoms . I think once we know what is actually wrong with ourselves , we can deal with the illness better . I hope your meds work for you .
Keep us informed
Take care Julie x

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