Advice!

Hi my name is Tom recently been diagnosed after 6 months off pain,blood tests, tramadol,co-codamol.

It has totally turned my world upside down, work finished me I cant tell you how down I am.

Just started on methotrexate and prednisolone(2 weeks)

and feel awful, my stomach is so bloated and painfull I cant sleep.

Someone please tell me this will get better??

31 Replies

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  • It will take time to get your meds sorted,but it can get easier. xxxxx

  • It will, it will! Hang on in there if you can. It took nine very long weeks for me before the benefits of the drugs took over from side effects, but they did. Since then things have been ok, and I have 90% of my life back - or maybe even 95% on a good day. And it's been years now. So try to stay positive, hard tho' it is. Polly

  • Hi Tom, like Polly, I am also 95% better.

    I felt quite emotional reading your question as I (as i'm sure most of us if not all) can completely empathise with you right now. For me, the hardest time was where you are now, coming to terms and not knowing.

    Finding this site really helped me as I thought I faced a life of pain and disability and never realised that this disease could be manageable.

    I had just given birth when my RA hit me, I could hardly walk, get dressed or do anything for myself. I was diagnosed with aggressive RA and thought my days were over.

    I work part time, run after 2 children and even manage the gym. If anything I am more active than I was before as I appreciate the simple things like never before.

    You will get there Tom :)

  • Hi Tom. You are roughly at the same stage as me but about 3 weeks behind me I think. I have been on Prednisolone which has been gradually reducing and MTX.

    I felt very nauseous too until I realised that I should be taking the prednisolone with food. I was taking it on an empty stomach. As soon as I started taking it with food I felt better. Also you should be taking Folic acid tablet at least a day before your MTX, which helps with the tummy problems that the MTX can cause. You didn't mention it so maybe they haven't prescribed it for you?

    Sally

  • Thank you all for your comments, Sally I am taking folic acid also I just forgot to say.

    I`m so glad I found this site, thank you all very much.

    Tom

  • Hi Tom you may find injecting mtx and the steroids did the trick for me xxx

  • I will try my best to see it through then talk with my doctor.

    Thank you!

  • Tom, my heart goes out to you . It is horrendous to begin with and from all of us who know first hand it will get better.

    Every combination is as individual as each one of us and we all have to play about with combinations and soon you will find what works for you

    In the meantime sending gentle hugs

    Katie

  • Thank you Katie.

    It`s comforting to know there are people out there and will to support.

    Tom

  • Hey. Tom

    I can only reiterate what everybody else has said. It's a long road once you get the diagnosis and then even longer to find the right combination of drugs that work for you. I was diagnosed in nov 2011 and am only just responding to treatment and accepting the diagnosis. Everybody on the site are truly amazing and will give you the support you need. Hang on in there mate I can assure you it does get better. And these guys on this forum are inspirational. Xxx

  • Thank you!

    Having the response i`ve had so far is a comfort.

    xx

  • Hi Tom. To confirm that we all understand how you are feeling here and as others have said it does get so much better once the drugs work. And even if they don't work for you in the first instance then there are others to try and there is a lot of hope now with RA. I was diagnosed the same month as Donnalouise above and it has taken a lot of tweaking - but I haven't been in huge amounts of pain for ages. Also I have found that learning all I can about this disease really helps as this way we regain some of our independence and also gain a better knowledge of triggers, adjust our lives and even improve them in some ways. The support and advice from people on here are invaluable. Tilda x

  • In time I`ll come to deal with it I`m sure, and with support from here my journey will be less lonely!

  • Hi Tom, as everyone has said it does get better, I found that the worst time was trying to get my head around it and coming to term with not being able to do the things I used to do, but now it's getting better and I am just starting on my third medicine, I found injecting MXT was better for my stomach than the tablets, but keep your chin up it REALLY does get better, and everyone on this site is so helpful,

    Take Care Wendy x

  • Thank you Wendy.

    Today with all the support has made me emotional, I just wasn`t aware how many people suffer.

    May I gain strength from all your support.........Thank you! ;-)

  • Hi Tom,

    And sorry you've got RA but glad you've found this site as the people on here are amazing with there support!

    I remember only too well being in the place your in now and it's extremely lonely and scary but you've already taken the first step in self help by finding this site, you'll get lots off support here, for me I also took the plunge and phoned the NRAS helpline and it wasn't like I thought it would be and was more like phoning an old friend but one who understood my pain and could help show me a way out off my dark lonely hole I was in, I also then went along to an NRAS group meeting, I'm not sure off your area but I'm sure there will be a group not too far from you, and when I went it was amazing to meet 30+ people all with RA and all various stages some just diagnosed and some 30 years down the line x so was great for me to see people still going 30 years after as I really thought my life was almost over.

    If your stomach don't get any better in the next few weeks from the methotrexate then go back to your GP or rheumatologist and ask for the injectable form off it, this stopped all my stomach pains, cramps and nausea etc, but be warned once your stomach feels ok from methotrexate you will then feel the full effect off the predisolone (steroids) as you will want to eat for England lol , most off people on here complain about the weight gain predisolone causes.

    Sorry to hear work finished you, was this due to your illness? As I believe with RA your protected under the DDA.

    Take care and hopefully things will improve soon for you.

    Julie

  • Hi Julie,

    Thank you for your lovely letter, I was a postman and as its my feet that are affected the most I couldn't do my job.

    I`ve had some lovely supportive reply`s and they have given me a glimpse of the light at the end of a very dark tunnel!

  • Hi Tom

    Just to echo what everyone else has said, it does get better and you will get your life back, just rebalanced a little. I was miles better after a few months and I'm still working. Hopefully you will get back to work when you're ready and if that's what you want, there are lots of publications on the NRAS site for employees and employers

    This site is great, you can ask anything knowing there'll be someone who's been through the same and understands it in a way those without RA can't completely

    All the best

    Ronnie x

  • Thank you Ronnie! x

  • Where you are really is the hardest part. Like everyone on here has already said once your meds are sorted out you will feel so much better. It is very hard to adapt at the beginning and it can really get you down......it will pass. You will get what works for you. This is a very insidious disease and every case is different, it's a case of trial and error for a while but stick with the programme, you'll see light again soon. All the best Tom. Jean.

  • Thank you Jean...x

  • It's a long journey and will take time to get the mix of drugs that agrees with you.

    But you will get there .doesn't feel like it at the minute keep your chin up.were all here to help each other .

  • Hi Tom

    Hang on in there we all know how you feel and it will get better.

    Sending you a big hug.

    Mary x

  • Thank you mary.

  • Hi Tom

    It seems it is the scariest place in the world when you are diagnosed after a long period of uncertainty and being in so much pain and don't have a clue what people are talking about medically, as there's so much to take in. I was 9 months not knowing what was going on before diagnosis, as my blood tests didn't show rheumatoid and they wouldn't give me anything except standard anti inflammatories and painkillers, until it finally did show RA, but it did get better ... Very much so although I am on a med at the mo that isn't doing very much and I suspect I need to change, I had Sulphasalazine then Methotrexate for many years successfully. No reason think you won't respond very soon and Methotrexate will give you back a lot of mobility and a lot of your life. Adjusting to what you can do at present is hard. I was an athlete and an avid fell walker. Had to make quite a few lifestyle changes but I actually went back and did a Masters Degree which I would never had done had I not finished work. Things can work out well even if there is a big hiccup in the interim! I promise you ;-)

    I am sure once you are established on Methotrexate you will feel much more mobile. It gave me great mobility back. Even got up quite a few fells again!! Due to a lot of stress I have had these past two years (Mum and her Alzheimers) my RA has flared constantly and not been controlled as well as I should so I am now on the biologic medication path and it's going slow for me at the mo till I find what suits or doesn't, but I know I will go forwards again. I found with MTX it took a good eight weeks to feel a major improvement, especially as you usually build your dose for the first four weeks so it's very much having to be patient and Lord knows that's the hardest thing.

    I can't comment on oral steroids as I have never taken any. Only the ones for joint injections.

    If your consultant suggests physio/hydrotherapy do try, as they don't make you train for the Olympics! Just gentle stuff you can do laying on top of the bed ... Or movement in a hydro pool. Clever steady ways to regain precious mobility and alleviate stiff joints. That's what I am back at doing at the moment. Physio. Anyhow, I hope you have great support from your Rheumatology team and GP and friends. You have it from us here!

    Julie (not Fibro!) x

  • Thanks Julie,

    Yes I have now started to realise its going to take time.

    I`ve been fit and active all my life and going from that to how I am now has been hard to take.

    I do appreciate all the supportive responses I`ve had thank you!

    Tom x

  • Yes, Try and make a clever compromise. My husband used to drive me up to the tops of hills etc and let me have a stroll on the flat for as long as I could and then sit and get the view without all the effort. Try keep the mind busy. Hard when you are in a lot of pain but when I am inside I make sure I lose myself and (educate myself!!) in a book or two. Well, it like a library here ... I love books, but whatever you can do that distracts you and makes you feel good. You will get there. You are on the road back now you have started your

    med. ;-). Julie x

  • hi Tom,

    As another male sufferer, having been diagnosed 10 yrs ago, am now 49 and have always worked as a sheetmetal worker, the first thing I did was explain to my boss the situation I was in, he admired my honesty and stood by me, giving me lighter duties whenever possible and due to my persistence and an attitude that I'm going to work even if I can barely walk, I found after a long, trial and error of drugs, 10 yrs on and i'm still a sheetmetal worker. Don't think life is over as I too initially did, good luck.

    Steve

  • Hi Steve,

    I was a postman so there was no way I could continue,work had no choice I suppose?

    I`m kinda in the frame of mind that maybe its all over for me work wise, I`m 52 so don't hold out much hope that I`ll get re-employed.

    For me now though its about getting better and some kind of life back.

    I`ll worry about employment later lol!

    Cheers

  • Hi Tom, shame you have to be a member of this exclusive club. But welcome, good to have another bloke here. Yes RA is life changing. Hopefully your meds will start to kick in and you'll start to feel better. I've had it for 4 yrs now and in remission, but lsome things I can't do as well or atall like I used to. Just had to adjust. Any more info or help you need just blog here as all friendly characters. Or you can private message us. All the best. Stuart.

  • Hi Tom

    The beginning of treatment after the hammer blow of diagnosis was very difficult. My world was up side down, I'm 49 in full time employment with three young children. The MTX and Hydro made me feel like .... I'm now on injectable and more balanced about every thing, the drugs need tweaking abit from time to time and I am learning to manage my time better so as not to exhaust my energy to fast but it is hard.

    This site has been great at times of real need and given me lots of support. I continue with life and work which is a battle but I'm am covered by the equalities act as its now known. Good luck.

    Will

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