New to this

[flaxton]

Hi I have just been diagnosed in January after 17 months on 30 mg per day of steroid which masked the RA to some extent. Have gained 3st in weight which is not helping the joints. Prior to this my husband and I ran our own business and I was super fit. It has come as a great shock to be in this state some days hardly able to walk and needing to sleep several times a day. Thank goodness for you people out there it gives me hope and keeps me cheerful, Have just taken my 4th dose of METX no improvement yet RA is running rampant new swellings everyday. Any one had some improvement before 12 weeks.

[Neverwell]

Hi and welcome

It can take up to 12 weeks or even longer to start to work

Hang in there have you got pain killers to take if not see your gp

Hope you find this site helpfully as I ha e done good luck and hope

You feel better soon

Gentle hugs Karen x

[flaxton in reply to Neverwell]

hi many thanks yep have painkillers am seeing rheumy on Thu. Can't believe how many people suffering with this horrible disease. It really does help to talk.

Hugs too Lorraine

[Hidden]

Hi, sorry about you being diagnosed. RA is a big shock to the system, and it feels as though no one else will understand, but don't worry as this website will be helpful.

I am surprised it has taken so long for you to be diagnosed. They should have given you some other form of NSAID instead of steroids to deal with the pain and swelling.

Most of us are put onto MTX when we are first diagnosed, in tablet form. The only problem is with MTX is that it can take up to 12 weeks to start working. But it will work eventually, so don't give up hope. Either that or the next time you see your Rheumy consultant, ask about MTX injections that you do yourself. That's unless you don't like needles. This seems to work quicker (it did for me).

The pain will feel like it is getting worse along with the swelling. But give it time. Don't worry about sleeping, you need it. Rest as much as you can. And make sure you have help and support from family and friends,

Hope you feel better soon. Shaz xx

[flaxton in reply to Hidden]

Hi shaz many thanks , my gp let me down said it was polymyalgia and because my job was physical I was a chef and we had a bed and breakfast, he kept increasing the dose of steroids to keep me going. It was a locum that referred me to the rheumy thank god. We have had to sell business ,currently cannot work so am really really pleased to have found this site.

[missjwren]

Sometimes its good to see a locum or different doc as they can sometimes get complacent.

It can take a while till the methotrexate works as they have to build up the dose slowley. Try keeping a journal of how you are on a daily basis as this could help your doc see how things are, as it is often easy to forget when you go to see them.

good luck. jenny.xx

[Shell1967]

Hi and welcome to this lovely site,I am also on mtx and didn't see any improvement til week 8/9,keep at it,be patient and then you will be reaping the rewards,what mg are you on,I started at 15mg and increased to 17.5 mg,take care Michelle xx

[allanah]

hi Lorraine, omg your story sounds exactly like my story. I got RA very suddenly and same as you went from climbing mountains to being more or less housebound and also I lost my job. I hope the mtx works quickly for you and I am so glad you are seeing the Rheumy this week. Take a lot of Questions on a list cos if u r like me you will forget by the time he examines you! Hope you get as much help here as i did, in fact , i am sure you will. Also if you look on the NRAS website there are lots of information and publications that they will send you and a section on being newly diagnosed. Shame to talk under these circumstances but we are all here for you, love and gentle hugs Axx

[Hidden]

welcome and i know the steroid story only too well from my oen experinces x

[SaraF]

Hi Flaxton,

Sorry to hear you have had to wait so long for a diagnoses.

I just wanted to check that as you have been on such a high dose of steriods for a long period of time, that you have also been prescribed a bone protector? If you havent as yet been prescribed then please ask them to provide you with one asap.

With regards to the mtx it varies with people to which they take ie tablet/inject to how quickly it works but in time I hope that you will notice some improvement.

You say you have pain killers but have you been give an anti-inflammatory? again if not i would ask if you could have this also.

It is all going to be trial and error im afraid and will take some time to get it right, but i hope you start feeling some relief soon.

Regards, S x

[miss]

Hi welcome to this site. I have found it to be very helpful hope you do to x

[flaxton]

Hi many thanks for all your comments feel better already, I have been keeping a journal since it all started would recommend to everyone, when you look back at some of your comments on rubbish days you can raise a smile. Seems to me we are all on a difficult journey so it is great to talk. I try to exercise every day however small it does help.My other big problem is have replaced a glass of wine with 2 chocolate bars. Not helping the weight loss !

[Munchkinella]

Hi Lorraine just wanted to say hello and welcome.

Agree with others, writing things down is the way to go. Useful for you and the rheumy. I always take my hubbie in with me, two sets of ears and all that.

Take care

Love Janet xxx

[Hidden]

Hi Lorraine, may have missed it but I don't think you say how much mtx you take .... for me it didn't start to work really well until I upped the dose to 25mg. So if after 3 months there's little appreciable effect a higher dose might help (I went from 15mg to 25 in about 6 weeks & then the improvement was almost immediately noticeable.)

The long wait for DMARDs to kick in is very hard, especially after steroids which, as you say, work well but are essentially just masking the RA whereas mtx can be a more sustainable option.

Glad you've got your diagnosis at long last though sorry you've joined this 'club' but this site is indeed very reassuring & informative. Only fellow sufferers understand the specific problems RA brings but also it's encouraging how many people come through the early days feeling so much more positive.

Good luck on Thursday, don't hold back with the questions,

Luce x

[Hidden]

Hello Lorraine - welcome. As others have said MTX isn't a quick fix but when it finally works its worth its weight in gold. I hardly know I have RA these days although I haven't been able to push up as high as the doctors would like me to because of tolerance problems - but I'm unusual in this regard - many people have no or minimal side effects on it.

I may not feel great on the drug but I can at least now do Zumba and walk long distances and can use my hands and wrists almost as normal so its a brilliant drug in lots of ways. It took about 12 weeks for it to work on pain levels for me and 6 months to make a big impact with Hydroxichloraquine added in because of liver troubles from the MTX. Then I was switched to injectable MTX and things really worked to the point where I consider myself to be in drug-induced remission now. Good luck with it all and keep coming back here - it helps avoid the isolation RA can bring with it. Tilda xx

[flaxton in reply to Hidden]

Hello Tilda

This is heartening news I am on 15 mg oral tablets which I am guessing is the norm to start on. The pain and swelling does seem to get worse daily so will discuss with the rheumy tmr as I am aware joint damage can happen fairly quickly. I am in a drugs study so am having blood tests every 2 weeks to check the liver. I am by nature an optimistic person so keep smiling. I have managed to get down to 7mg of steroid per day the withdrawal was horrendous but so are the side effects. I could give jabba the hut a stand in at one point and my skin is so thin and covered in bruises.

You are right on the isolation unless you have this horrible disease you do not understand it. My hubby is great but family and friends sometimes think you are just not joining in, they cannot see how you really are.

Thank goodness we can talk and support each other.

Best wishes

Lorraine x

[Craw]

Hi Lorraine

Everyone has already said all the things that I would have said.

I hope when you see your Rheumy tomorrow he will be able to help you with the pain and swelling.

Mary x

[Neonkitty]

Hi Flaxton, sorry to hear you have RA and an active life becoming a (temporary) inactive one. I say temporary as I am very sure MTX will give you results! Understand entirely how you feel, as I was an athlete and a serious fell walker. Have had spells of remission and have been able to do quite a lot on MTX for many years (but at the moment a period of poor mobility and transition and a new med.) It is a big shock to the system to be halted in our tracks whatever we do. Things we take for granted we suddenly can't do, or I shouldn't say can't, but we find things more difficult, but I bet when your MTX has got to full dose and in a couple of months time you will feel very much improved.

Neonkitty xx

[Josie2]

Hello

Sorry for the late post but this is a fab site, though not because it means we all have ra.

Ive found great help and lovely people here.

Jo

Xxxx