Does it get better?

Hi everyone. So I'm 24 and was diagnosed with rheumatoid arthritis last year . I've started taking methotrexate and hydroxychloroquine as well as painkillers.

I haven't really managed to get a straight answer from my rheum team so I thought I'd ask and see if any of you know the answer. What's the goal with treatment? I don't know whether I'm aiming for the pain to not get worse, or to improve or go away or keep fluctuating.

I know it's probably a hard question to answer but I suspect it'll help me a lot if I know where to set the goalposts!

20 Replies

  • Personally I think you should aim high....and if things aren't improving keep asking the rheumy whether there's more that can be done to help. You should aim not to be in pain, to be able to live a normal life, and not to get any damaged joints.

    To keep my story short, that's what I did and the end result was that I'm on 3 DMARDs, which work very well for me and I'm in remission. I still have flares every now and then, and have to be a bit careful, but otherwise I'm fine. I go for weeks without needing painkillers, and the daily problems I have are more due to osteoarthritis than rheumatoid arthritis now. I have some damaged joints, but that happened before I started on the meds.

    I do believe that mine is the more common experience, so if it can happen for me it can happen for you too. And I don't think you shouldset your sights lower until you've tried everything and the docs say there's nothing else to try.

  • Hi Banana

    In my case, yes it did get better. I was diagnosed in 2012. I started on mtx very quickly. They say it can take up to 12 weeks. Mine was still grumbling and they added sulfasalazine, which afraid did not help. Most times I hear they try a third dmard, but in my case they started me on a biologic along with mtx. I would class myself in remission now, pain free from RA flares.

    I won;t say there haven't been some up and downs during this last 4 years. It took a while to find the right medication. I did have some damage but just tendons really. Some times you still get mechanical pain from that but I used the services of occupational therapy and physio. So apart from an ankle that has been giving me trouble ( wrongly diagnosed as osteo) I make a nuisance of myself to get the right treatment for this. Don't be shy of telling your team when and where you are in pain. Obviously you have to give the meds time to work but you will know when they are working :)

    The plan really is to get you into remission so less inflammation, less pain , less damage. To get you back on track on being able to live a life or as good as you did before RA.

    I think the first year is the worse being given that diagnosis, going through flares, the change in lifestyle, trying to find the right medication for yourself and there are a lot of medications and help available.

    Am at the point now, where instead of going to hospital every 3 months I have just recently asked if I can see him once a year and my biologic nurse once a year too, which he agreed.

    Hope this is if help to you.


  • Hi,just like the other guys said really constant contact with doctors and rhumy team as much as possible,try the meds that best suit you and try and help yourself where possible flare ups can be caused by diet so have a look and see if anything triggers you and the avoid obviously haha also find which works better for you hot/cold a hot water bottle like for me may be a god send ( hot lover sorry)its a learning curve but thanks to this site your never alone seriously this site is awesome got a question someone will definitely try and answer or help

    All the best

  • I am 76 years old and I have had RA since .1978. My grandmother, aunt and I all got it at age 39. My grandmother was Bedridden for 20 years. My aunt and I taught school. I retired on disability at age 55. There are so many new medications. There is so much more help now. I have had 7 surgeries on my hands and wrists but I am still making pies, cooking and playing Mah Jongg. Try to stay off pain killers. Try to use Tylenol. Exercise and use hot wax and hot tubs and warm showers, all better than pain killers. Have a positive attitude find things to take your mind off pain and RA. Find a pool and do water walking. Just keep busy.

    You will be fine and some people go into remission. I have a friend that is 77 and hers went into remission and has not returned. Be positive!

  • It is horrible and very scary to discover you have RA, especially when you are so young but the drug treatments available now are very successful for many of us. I was diagnosed in 2009 at the age of 59. I was prescribed hydroxy and mtx and this has worked for me. I have been in official remission for nearly 2 years now. I occasionally have a flare when I take naproxyn for a few days. I have made a point of educating myself about RA- reading all the leaflets NRAS publish. We are much luckier than people diagnosed only 10 years ago.

    Good luck. I hope you are soon under control.

  • The aim is to get you into remission so you can function as normally as possible.xxxxxx

  • I have been wondering the same was diagnosed last August and am on mtx. No great improvement yet but like you I am not really sure what we are aiming for. It seems remission is unlikely? I don't know! My rheumatologist sees me for literally 2 minutes and sends me on my way. Sigh.

  • Remission is more likely than not these days, although can take a couple of years to get there. If not enough improvement after 6 months on a therapeutic dose of MTX, ie 12.5mg or more, then start nagging your rheumy.

  • I am happy to report that my symptoms have finally begun to show good improvement after 9 months on mtx 25mg.

    My problem now is the side effects but hoping to reduce the dose slowly soon :)

  • That's great!   If the side effects are too bad you could always ask to try a different drug. 

    Hope it just keeps getting better & better

  • I can only agree with most of the others. I was diagnosed in 2009. The first year was horrible, but it gradually got better and now I'm in my second year of remission. This means I can lead a normal life! Hurray! Medication gets better all the time, so you'll probably profit from that as well. The health professionals get better as well and then there is NRAS. It's horrible to get it but it's not the end. All the very best and keep in touch.

  • Hi wish I could say the same as you. I have been diagnosed since 1998, have had most treatments non biological and biological, now on Abatscept with not much joy. Have had operations but I am still waiting for a pain free day, but I keep telling myself that there is always someone worse off than me. My rant over lol (not at you though )xx

  • Hi Bella, I am very sorry to hear that nothing is working for you. I hope you have a good support network and still some good days! Have you tried to get help and/or advice from the lovey people at NRAS? They seem to have a wealth of information and maybe know of something your RA team are unaware of? I wish you all the very best from the bottom of my heart.

  • Ty. I have a team of people including consultant , I think I am just one of those people where nothing really helps, not for the want of trying. x

  • With the right meds you can go back to having a normal life! I was diagnosed last year at 24, and have been on hydroxychloroquine and leflunomide since, and it has worked amazing. I haven't had any serious pain since, I sometimes even forget I have this condition.

    Keep your hopes up, it can get better!

  • Really glad someone asked this question. I am at the beginning of the journey. Now I know where I should be going.

  • My daughter aged 24 has just been diagnosed with RA today and put on the same meds. Now waiting to see how the meds react. I wish I could answer you, hope you find your answers soon, however this is a great forum with a lot of helpful people

  • Everybody is different and no one can tell how your disease will progress not even the experts. Hopefully you will find a drug or combination of drugs that will keep your inflammation under control and slow joint deformation - it may take time and changes to get the right combination.

    I was diagnosed at 19 and now 49 and there have been a mixture of settled periods and rougher ones - its always in the background and you have to learn to live with it and often sacrifice one thing for another as you cannot do both or ensure that the day following an event is set aside for 'you time' to recover.

    Try and build a good relationship with your rheumy team and be honest with them as you will need them.

    Many on these forums are probably the unlucky ones as those whose disease responds well to the drugs and can carry on as normal do not always need the support from others. Farm

  • Thanks everyone. This really helps. I feel much more in control now I have my goals set in my mind. :) really appreciate the advice and encouragement

  • Hi this is my story..i started to get random pains in joints aged 25, got diagnosed at 30 with ra. Horrendous!! My career as a secretary was taken away from me very quickly, I was unable to do much for myself. Got so depressed, couldnt walk, drive, couldn't do anything for my toddler and baby I'd just had. At this time I was put on mtx 10mg and hydroxy. Every few months I saw my rheumy, they had to be increased until it was the right dose for me which was 20mg. I started to get my life back after just 6 months from taking these tablets. I was amazed one minute I felt id won lottery, then i felt low as i panicked thinking they my stop working. I think for a while I was mentally scarred. I got some support and advice from the OT regards a career change. I have worked for the last 7 years as a part time careworker luckily having understanding employers and supportive colleagues. Im 41 now and apart from fatigue (which is the only reason Im not full time) I feel great. I would say that I feel weak and fragile sometimes tho. A few times a year ill get a flare up as a reminder that it's still there but not excruciating pain as before. I love my life now. Its worth giving mtx a chance. I'm sure everyones story is different but these forums are great for support. All the best.

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