One month on from diagnosis

A month ago I was told I had Ra. It didn't come as a complete surprise but it was still a blow. To be fair It's not what I was expecting to hear at 43, just as my children had grown up and I was embarking on the next stage of my life. Having to explain the disease to my parents, husband, children and friends has not been the easiest thing either but it's done now. Tears were shed and slowly I came to terms with the new me. Sometimes I catch my husband looking at me in a way which I'm not keen on, like he's feeling love but sadness. Next time I catch him doing it I'll get him to speak up and tell me what's on his mind as I know he needs to talk too. But here I am, a month on from starting mtx, I've not gone bald as feared and am getting back my lust for life and sense of humor which had all but disappeared under the weight of pain. My weekly blood tests have been fine, showing no problems with liver function and a gradual decrease in my inflammatory markers. For the past week I've been waking up with no stiffness or pain in my hands or feet either so I'm feeling very thankful. I know this is a tricky devil of a disease and it will probably find a way around the drugs at some point but for now I'm enjoying every pain free day. I've got a few things planned to look forward to in the next few months. A trip to London in August to see Blood Brothers and stay in a nice hotel for our 25th Anniversary. Our first proper date was a trip to Alton Towers when I was 16 and OH was 19 so in September were going to do it again, roller coasters and all! In December were going to see War of the Worlds on tour in Liverpool and I've also signed up for membership to a really nice health club to work more on my fitness. So as you can see life has not stopped because I got Ra. I think if anything it has helped me realise I need to live for today and enjoy life to the full. I've lost 4st, stopped drinking, started exercising, eat a much healthier diet and rediscovered my waistline :-) To anyone facing a diagnosis please please try to stay positive as you may also find living with Ra is not as bad you expected.

love to all

Paula x

24 Replies

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  • May I ask how much mtx do you take. I got inflammatory arthritis been in pain since the start of december third week of mtx and still no change

  • Hi Elaine, so sorry to hear you're in pain. I started on 7.5mg for 2 weeks then moved to 15mg. Although I'm not in pain I still have some discomfort and I don't know if it's down to the mtx or the steroid injection I was given. I was told by my rheumy that I'd probably have a steroid injection at my first 3 visits to help until the mtx took effect. I've had just the one up to now but not needed any extra pain relief. What are you taking?

    Paula x

  • Hi Paula,

    What a lovely blog and glad to hear that the meds are helping you and you are feeling more positive. Well done on the weight loss and joining the health club - I have just cancelled my gym membership as I wasn't using it and I want to go back to my my old running club but my feet won't let me at the moment :(

    I saw Blood Brothers a few years back, it's great but I would advise taking a box of kleenex! As for Alton Towers, rather you than me, I get dizzy on a roundabout so I would be hopeless!

    Long may your pain-free days continue.

    Mags x

  • Thanks Mags, I'd love to be able to run but can honestly say I was rubbish at it before Ra. I hope you're feet improve so you can get back out there. x

  • Well done you,losing 4st is an achievement in itself without having to battle with ra. Sorry mate but you can keep your roller coasters, like mags i am happier just watching. I hope you enjoy your health club and you get even fitter than before.Perhaps you might look like you did when you got married and that hubby of yours will be given a run for his money!! Ha ha

    Long may your good health continue, love sylvi.xx

  • Thanks Sylvi, OH has been on the diet with me and the tinker has matched me pound for pound lol. It's rather nice having a new man though :-) Maybe I'll stick with him for another 25yrs now he's looking so sexy. I can't wait to get on them roller coasters and show them teenagers how it's done. x

  • I also started on 7.5mg for 2 weeks now on 10mg for 2 weeks then on 12.5mg and so far had 2 steroid jabs in arm which improve the arthritis alot next appointment in sept. Last appointment was take these (mtx) see you in 3 months to see if they work. Thinking about changing hospital.

  • My appointment wasn't much more involved to be honest Elaine. I was diagnosed, given loads of booklets to read, told to pick up my meds from my Dr's in 2 days and advised to come back in 6wks. Rheumatologists are just so busy it's pretty near impossible to get a quality appointment. I must add though that I'm happy with my rheumy and feel confident under his care. Hopefully you'll see more benefit as the mtx dose increases to the optimum amount. Do you take painkillers or anti inflammatories? Maybe it would be worth calling your specialist rheumy nurse to discuss this. x

  • Hi Elaine

    It can take up to 12 weeks for MTX to really work, so it isn't that unusual not to feel much change after 3 weeks. Hang in there, and you should soon see a great change. one of the really frustrating things about this disease is that everything takes so long, and it's hard to be patient.And it's also pretty normal only to get an appointment every three months. But if you haven't got it already try to get a phone number for the rheumy team at your hospital so you can call if you need advice before sept.

  • Hi Paula,

    Well done, glad you are being positive. I think your RA and mine are at a fairly similar stage, have a read of my blog for more details though.

    I saw Blood Brothers a couple of years ago, brilliant but as Mags says you will need those tissues!! Have fun.

    Mary x

  • I'll check your blog out soon Mary, it's been a bit busy here today. I'll definately take tissues if Blood Brothers is sad as I'm a proper crier! x

  • Hi Paula,

    Like you it is just over a month ago when I was diagnosed with RA, not what I wanted to hear after suffering with OA for over a year. I found your blog very moving and yes I,ve had those looks too from my wife. I can,t say anything to her yet because she is still working and has a 91 yr old father who needs our attention most of the time. I know you should not speak i,ll of the elderly but he will not grasp the situation we now find ourselves in. All he talks about is himself and still expects us to run around after him even though he is more than capable of doing his own shopping and using the bus to visit, yet I am still expected to drive to collect and take him home (on his insistence) when at times my hands hurt so much I can,t even get dressed. We are about to celbrate our 47th wedding anniversary with a trip abroad soon And I hope the oppurtunity will arise for us to talk. BY the way we are aged 64, my wife and myself 68. In other words ELDERLY.

    regards, Michael.

  • Hi Michael and thankyou for your post. Sorry to hear you've also just been diagnosed with Ra. I hope that now you have a diagnosis you are getting the treatment you need and will soon be feeling the benefit. We can all appreciate on here how hard it is at times to carry on when it takes all your effort just to fasten your shoelaces. I know there's been times when my hands have hurt too much to drive and at these times I would not be able to ferry anybody around. I really think you need to tell your wife so she can help support you. There's some excellent information on the NRAS site for the newly diagnosed. I know my husband read it and it helped him understand that I don't have "a touch of arthritis". Congratulations on celebrating 47yrs of marriage and I hope you have a wonderful trip abroad. As for being elderly...pah! You're only as old as you feel....hang on that makes me elderly too ;-)

    Take care

    Paula x

  • What a great positive blog xx

  • Thanks Summer x

  • Hi Paula. Well done for getting through the first major hurdles of the RA journey (I'm with Sylvi on this - who needs rollercoasters when we're in one already?!) so well.

    I'm in son's flat in Morningside, Edinburgh all alone this morning and it's bliss really. I haven't dared get out of bed yet though as having first lie in since I set off 11 days ago. I know my feet and ankles will be very sore when they hit the ground so am postponing the first vertical moment of the day!

    My plan for the day is to clean this place from top to bottom with lots of nice breaks in between finishing my trashy book. Then tonight I will choose a place to meet my sister, her man and 2 kids for a last meal out - and I fly home tomorrow - adventure over.

    Keep being as strong and positive as you can muster - right folks i'm going vertical wish me luck!

    Love Tilda xxxx

  • Lol, it's funny how that first few steps are the hardest. I also lie in bed building up the courage to stand. I hope you've had a lovely time away and built up your store of happy memories. Take it easy today and don't overdo things on the cleaning front.

    Lovely to hear from you

    Paula x

  • Hi Paula,

    have been reading your blogs for a while now, since being diagnosed with RA in March and felt inspired to reply after reading your lovely, positive blog. Am 49 and, like you have children at a more independent stage of life. Am so pleased for you that the methotrexate is finally working and you are able to be so positive. After 5 weeks on a 10mg dose, I am hoping that I'm not imagining that I am too also starting to feel a bit better. Yesterday actually managed to walk into town, which is something I've not managed to do in months. I think that having nice things to look forward to helps keep me going on the bad days. Wishing you wonderful times ahead. Keep up the lovely positive blogs.

    Caroline x

  • Thanks for your lovely message Caroline. I find writing blogs not only helps to get my thoughts in order but it gives my poor husband a little break from RA talk. I'm so glad you felt inspired to reply and tell us about your own experience and hope to hear more from you in the future. How brilliant that you've been able to walk into town :-) I know it's horrible when something as basic as taking a walk becomes impossible. I remember sitting in my car outside the swimming baths, determined to make it to the pool but dreading the few hundred yard walk to get there. I hope you continue to improve on your meds and we can both make the most of our good days.

    All the best

    Paula x

  • That's great Paula. So glad that you're responding well to the drugs so do enjoy every bit of it. And brilliant about the weight! Rather weirdly I've found a few positives about RA. Like you I look after myself better now, and am much calmer as I try not to let little stuff get to me now. It's a different life from what I had planned, but there's still good stuff. I think your idea of planning some treats is a good one, so have fun. Pollyx

  • Hello Paula (nice name isn't it?)

    Just want to say that it's nice to read something so positive. Anyone reading this having just been diagnosed will get alot of comfort, knowing that yes, once their medication is sorted there is life with RA.

    Congratulations on you your marvelous weight loss, any tips?

    Paula

  • Thanks Paula, I use a free website for helping with my weightloss called myfitnesspal.com I follow a calorie controlled diet and have increased my walking and swimming. No magic cures I'm afraid, just hard work and determination.

    Paula x

  • Hi Paula

    Glad you are feeling more positive and enjoy your breaks away. I think I am still getting used to things this is week 2 of my combination drugs so still feeling a bit 'why me' and I must say also..very angry and disappointed in some good friends reaction to the news when I tell them.

    I hope I turn the corner like you :D take care xxx Fiona

  • Are your friends like mine, as in they have no idea what you're going on about? I think most people just think we have a few stiff joints and were being a bit melodramatic. To be fair, before I got Ra I had no idea what it was either. I wish the disease would be better publicised as it would really help if there was greater awareness. This site is the only place where people really understand what were going through. I hope you turn the corner soon too Fiona.

    Take Care

    Paula x

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