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Hi I have not long been told I have RA I was feeling so tried and my wrist and knees and feet were swelling up for two years I was back ans forth to doctors but nothing got done. Then on Sunday I finished work came home and my husband was so worried took me to doctors and had bloods done and sent to hospital and was told I have it very bad they put me on mtx 5 months ago and I still feel the same so in oct they r going to change me, does this mean I have to go thought it all again with the next pill you know start small them build them up again I'm so down it seems nothing works ;( please help me

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  • I was diagnosed in march,having suffered from similar problems to yourself. Started on metho tablets up to 20mgs but side effects too horrendous. Stopped for 6weeks. Set back with lots of pain,But now on meth injections. Not right yet but feel 's tho I'm getting there. The fatigue is still a problem tho. Don't think it will go overnight.

    Good luck

    Don't give up, there are a lot of drugs out there that you can try.

    The doctors can give you a injection steriod to tide you over till you get the drugs into you system.

    Best wishes

    Carole

  • Thank you I know it will take time it's just the pain and feeling so low il get there I hope all goes well for you too x

  • Hello,

    I'm so sorry to hear that you've been feeling unwell for so long.

    The fact that you were started on mtx so soon after diagnosis may be a good sign from the medications point of view. They often start on other drugs and work their way up to mtx before considering the biologics, many of these, as you suggest, take another 6 months for an accurate indication of their efficacy.

    Without knowing what you will be going on in October I can't really give you any helpful comments. What I can say though, is that when mtx didn't contain my disease I then went on to the Ant-TNF (biologics) which I take with mtx and found them to be an enormous help. If your Rheumatologist is looking at going down that road then that is very, very good news for you.

    Unfortunately these drugs were not available when I was first diagnosed and I had many years of active RA which has left me with damaged joints. The RA is now pretty much under control with the new meds and it is the joint damage and osteo arthritis which leaves me disabled.

    Take heart that your Rheumatology team seem to be on-the-ball with this but don't be afraid to discuss your options with your team and explain your fears of waiting so long for drug assessments.

    In the meantime, if your inflammatory factors are still high, have you considered asking for a steroid injection? There should be time for it to work out of your system so that they can establish a 'normal baseline' before the start of new drugs. Try giving your specialist nurse a call. They won't know that you are struggling with the pain unless you tell them. (Hark at me talking! - I think I'll follow my own advice and ring mine tomorrow)

    Good luck with it all

    Judy xx

  • Thanks Judy all I remember him saying was it began with an o that's all I remember I will give them a ring tomorrow x

  • Was it Orencia? That is one of the biologics. If you check out the popular tags on the right hand menu of this page you may get some feed back on it. Biologics are generally a lot faster working. Sounds good.

    Judy

  • Hi Neverwell

    I can only agree with what the others have said, dont lose hope cos in October you may find this is the treatment for you!

    It does take a long time sometimes though and rest and patience are so important to helping yourself feel better. I would ring your nurse as Judy said, as October is still a while away, as the steroid injections made me feel like a new woman for a few weeks, and may just get you through to your appointment as your bloods are so high.

    Also have a chat about your pain control as what you are having isnt really , by the sound of it, controlling your pain and theres no need to suffer when theres lots of stuff they can give you and I found that helped me.

    Let us know what they say, and try to sleep if you can! Pillows under the knees helped me!!

    Love Axx

  • Thank you every one I will phone the nurse Will let u know x

  • Hi Neverwell

    When they tell you which drug it is, make a note of it. There may well have been discussions about it on here before, and you can also find information on the drugs on our website:

    nras.org.uk/about_rheumatoi...

    They may be planning on using combination therapy, where they add a drug to the MTX you're already on. That way the MTX would hopefully still be helping while you wait for another drug to kick in. Combination therapy is very common these days, and we have an article about which you can access from the link in this post.

    I hope you feel better soon

    Victoria

    (NRAS Helpline)

  • Thank u all I will let u know x

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