New but would like to say thank you

Hi

I was diagnosed officially yesterday but have been reading your blogs and questions over the past few weeks and would like to say thank you to you all for such a supportive and informative site. Reading about your experiences has helped me to stay calm during a scary time and its really reassuring to know I will have somewhere to turn to with all the questions I am likely to have or somewhere to go when I need to chat to someone who understands.

I am waiting for my chest x Ray results and will then be starting on methotrexate,hydroxychloroquine and folic acid.

30 Replies

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  • Hi Trace

    Sorry to hear about your diagnosis, I've been recently diagnosed too and it is a scary time! I'm two weeks into taking MTX....wished I'd known about this site whilst I was waiting for my consultation but hey invest found it now :)

    Everyone who has replied to my blogs and questions have been very helpful, friendly and supportive as I'm sure they will be to you...I've been fairly anxious about it all especially with taking the drugs!!!

    Good luck

    Maddie

  • iPhone typo... Meant to say I've.

  • Hello Trace - welcome to this site. I'm sorry you've just been diagnosed with RA but at least you have found us at the beginning of your journey with this disease and hopefully you will find that the MTX and Hydroxy work brilliantly for you in time (you must give it time though) and you will be able to come on here as one of the drug success stories in a while. I am definitely in that category (on same meds as yourself for 16 months and just having a wee break from them at the moment) although I'm a worrier so often come here just to worry as opposed to moan about anything serious.

    It's a good place to drop into often and is one of the few good things about having RA I've found. As well as people in the same boat as yourself such as Maddie there are also those who have had RA for a long time and they are really helpful to learn from too. Tilda x

  • Hi Maddie

    Thank you for replying .How have you found MTX ? I have quite a sensitive stomach and am taking pantoprazole for acid reflux so a little worried about how it will affect me too although anything will be better than the unpredictable pain.

    Tracy

  • Hi Trace :-) welcome. It's a great site isn't it? Good to know you can offload to people who truly understand what you're going through. I know it's a scary time when you've just been diagnosed but we're here to listen. Sending gentle hugs.

    Take care

    Love Janet xxx

  • Hi Trace

    I've been ok with it....I say that with caution as I will take my next dose tomorrow and don't want to tempt fate!!! I was very sick the first week but think that was down to the folic acid that's supposed to help.... i'm a bit weird :) i do have a bit of a nervous tummy so could be that. My tummy is a bit grumbly for a day and I feel very tired for a couple of days and had some cold sweats this week, I spoke to my Rheumy nurse today and she said it could be the MTX or a variety of other things....it's still very early days though so I'm going to diary how I feel to build a pattern, I'm only on a low dose at the mo and have my first blood tests next week.

    When are you going to start taking your meds and good luck:)

    Maddie x

  • Hi Tilda

    It's reassuring to hear that same meds have worked for you.

    It's so nice to be able to talk to people who have been through same thing.

    Tracy

  • Hi Maddie

    Can't seem to get "reply to this" link to work.

    Waiting for nurse to ring back with ok from chest x ray but think I may leave taking it until next Friday or Saturday in case it makes me feel I'll. Don't want to take any more time off work.

    Tracy

  • Yes I've had trouble with that too...

    That's exactly what I did coz I didn't want to be off work or be ill in work, I've only told close colleagues and my manager about it as sadly I've found some people don't really understand this condition.

    I feel a bit ropey on Mondays but then I did before I started taking the MTX :) What dose are you?

    Keep in touch it will be good to compare notes with a fellow "newbie" and I'm sure you will get lots of help, advice and support from the ladies and gents who have been dealing with this a lot longer than me.

    Maddie xx

  • Taking 15mg. Will be good to compare notes. My work have been very supportive,work in small school so most know what's been going on. Still not the same as being able to talk to people who understand. So glad I was brave enough to post. I'm normally a "lurker".

    Tracy

  • Tracy, taking your mtx at certain times of the day can also help you. Do you take yours in the morning or at night. I would reccomend taking it at night and then hopefully you will sleep through the worst part of the side effects. Yes we are a great bunch of people who share the highs of our life as well as the lows, so welcome. sylvia.xxx

  • Welcome.. you are starting on a good standard combo feel free to join in.. no one bites on here!!.

  • Hey Trace,

    Welcome to this lovely site :) Though of course, I'm sorry you were diagnosed with RA :( You did the right thing signing on here, wish I'd known about it when I was diagnosed about 1 and a half years ago!! It's reassuring to know there are people in the exact same situation and who can relate to you even if you just feel like ranting about RA a bit :)

    Best of luck with your meds, they'll take a while to work but I'm sure they told you that at the hospital! I've found that keeping as active as possible has helped A LOT, especially with my mood. I'd been feeling very low at times but even mild to moderate exercise cheers me up.

    Looking forward to hearing more from you!

    All the best, Christine

  • Thank you everyone for all your lovely replies. All the support made me feel quite emotional.

    HI Christine - I've gone from running 5 times a week to nothing at the moment and am desperate to get back to doing something. I do love walking and may try some swimming but not so keen on it. Know I need to build up again gradually.

    Tracy

  • I know what you're talking about, I was nearly in tears from all the lovely responses to my self-pity blog from yesterday ;)

    I was the same as you, I'd been running up to 5 times a week and up to 50min each time before I was diagnosed (I needed to let off steam from my frustrating work at the time lol). Then I didn't do much except walking as there was no bus to my work and cycling when my knees allowed. Walking I find is the best exercise if RA is still active. With proper shoes of course! Swimming too of course, I tried it a few times but felt very self-conscious as I'm very bony :( Not that I ever got mean looks or comments but I still didn't feel good. Plus I'd get extremely cold in the water as well. So give me a beach and the sea and sunshine and I might give it another go ;)

    I've just got into jogging again, back from a morning run. Sometimes I worry if this is doing bad things to my joints but I don't think so. My rheumy said there's no reason not to jog as long as it doesn't hurt and it hasn't so far. So chances are you'll be able to run again :)

    All the best, Christine xx

  • Thanks Christine, it's really good to know that you have managed to get back into your running. There's hope for me yet. My exercise for today will be a bit of cleaning without overdoing it though. That will be an achievement in itself.

    Tracy

  • Good luck with the cleaning! Are you on any other meds while you wait for the MTX/Hydroxy combo to kick in? Did you get a steroid injection?

    Christine xx

  • No,she didn't think steroids would be useful as the severe pain comes and goes( every few days)! Still have lots of constant pain as well although nothing tender when she touched. Don't quite understand her thinking.

    Tracy

  • Hi, didn't know there are so any " lurker s" lol!!!!!!! Glad u are here with us but sorry to hear you r feeling bad. I felt sick on mtx but te frolic acid helps and if it did get worse just phone up the hospital helpline, you find you do have to cal them more initially, they can also give you anti sickness tablets.but generally it settles don quite soon! It does take up to three months to work so you have to be a bit patient in the beginning. Did they give u good painkillers and do you take them regularly? That was the biggest change for me , taking painkillers and I would reccomend that u take them to prevent the pain rather than waiting till the pain happens! The NRAS helpline on the Nras home page is also amazing and really really helped me at the beginning, so if you want a chat or advice they r great. Even though I have been 2 years now I still remember those early days, so sending you gentle hugs and I hope the drugs kick in quickly xx

  • Thank you for your advice almanac. Have been taking regular paracetamol which takes

    edge off daily pain and so far for severe episodes have tried tramadol which was awful, a low dose of codeine which didn't work,and oromorph which worked for one episode but not the next and gave me awful headache. Think I will try increased dose of codeine next time,if that doesnt help then back to gp.

    Tracy

  • Sorry predictive text! Allanah !

  • i know mine get me in some awful pickles, facey!!! lol it was the rheumy consultant at a living with arthritis course says she advises that people take two paracetamol, they dont work, but if you take the allowed dose two, four times a day , maximum of eith in 24 hours, it will work, so i follow her advice!

  • I agree with Allanah, don't wait until the pain gets too much to bear before you take pain killers - there's no point being a soldier, it'll just make things worse. And unfortunately I speak from experience. It had to get really bad before I started taking 2 paracetamol in the mornings and boy what a difference it made!! But then again I have a bit of a medicine phobia (the irony lol!) so it usually takes a while for me to get my head around the fact that I need proper treatment. But now I wouldn't go back for anything!

    Sometimes they can give you steroid injections at your GP's, I had that once when they postponed my joint injection appointment at the hospital. And injections are way better than the oral steroids unless they put you on a short course. Otherwise you're hooked on that Prednisolone indefinitely!! So stay away from that if you can :D

    Hugs, Christine

  • Hi Tracie,

    Sorry that you have this horrible disease. I have only been diagnosed 6weeks,& am about to start week 5 of my treatment: MTX, Hydroxy & folic acid, I am also carrying on with Omeprazole & Naproxen which I was prescribed when they diagnosed Tennis elbow in both arms, since, have been told is the result of the RA, also the Carpal Tunnel in my right hand. Like You I have found this site & everyone on here so helpful. It good to be able to share my worries & problems with people that understand.

    Good luck & keep in touch

    Rie xx

  • I was interested to read your note on tennis elbow. Just been diagnosed on right arm but didn't realise it was related to RA & consultant certainly did say so. I read it is due to repetitive strain. I haven't been near a tennis raquet & couldn't think of any repetitive movement except knitting. My husband says it's because we went to Wimbledon last year!

    Good luck with your treatment.

  • Good luck with your treatment, Trace. I was always told by my Rheumy I should not be a martyr to my pain as I used to resist taking painkillers so if you need them, do have them. I wish there had been a site like this when i was diagnosed with RA. There was a contact for a volunteer telephone line, but it isn't quite the same. Here it is good as when we share our experiences, we can all read and benefit from them on this board. MTX worked well for me for many years and no side effects, and I hope you soon feel the benefits of it.

    Neonkitty xx

  • Thank you everyone for your good luck wishes and advice. This site has been such a help already and I hopefully soon I will be able to help others with my experience.

    Tracyx

  • Hello Tracy,

    I've joined in a bit late, but welcome from me too. Sorry about your diagnosis with RA but as you have already experienced, we are all here for each other and that's what makes it a great site to be part of.

    June x

  • hi trace , Welcome to the site, i too was recently diagnosed in September 2012 and only joined the site yesterday . I posted a blog and had lots of really supportive replys and welcomes, Hope you get on well with your treatment , i know from people on here and at my rhuemy appointments sometimes if the meds dont agree with you that it can be a while before they get the right one to suit so good luck with your meds hope you get on okay. :) .xxxx

  • Hi Lena, thank you, starting Mtx tonight so fingers crossed. Just read your blog and like you I was in tears with all the support I received. I feel like i have a whole new group of friends and the bonus is that they all actually understand what i am going through. Good luck with your treatment

    Tracyxx

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