Newbie ☺️

Newbie ☺️

Hi I'm Morven. I've had RA since childhood and I'm now 45. I had many years pain free on Etanercept but had to come off this in 2014 as I developed cancer. Since then I've been trying other forms of meds and at the moment on a mix of sulfazalazine, methotrexate and hydroxycloriquine and is working for now.

I'm also an occupational therapist so know tips and techniques to make life easier. My biggest problem for now is fatigue but working on that too !

11 Replies

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  • Thanks so much for the warm welcome

    Wouldn't mind finding out a bit more about your diet - always good to have tried and tested info although have tried some previously and didn't work but may have been my fault for not persevering . 😃

  • Hi hello and welcome.

    Sounds like you have had some awful problems for some time and been through the mill..I have no knowledge of etanercept and unable to comment but I have been on mtx jabs,sulfasalazine and hydroxychloroquine up until Nov 2015.Unfortunately, I had a bad reaction to mtx jabs and was hospitalised.As a result I have had to stop them. but I am so glad they seem to be working for you,and long may it last!!

    There are people on this site with a great wealth of knowledge and advice to offer .

    As an occupational therapist I think you will have a lot to offer to others on this site too,so don't be a stranger,

    I wish you best wishes with your treatment of this condition.

    The fatigue is hard to manage but you have to pace yourself.This can be very difficult if you are trying to hold down a full time job as well.

    Whenever we do something that we like there is always payback the next day so,you have to try to balance them out.

    You will find some good advice on this site and it's also a safe place to vent your frustrations.Folks listen and don't judge as we are all in the same position as you.

    Look forward to catching up with you soon.

    Crusee

    XX

  • Hello Morven22 . I just wanted to say hello and I'm sorry about your cancer diagnosis. It's so nice you found this forum. It's a good place for exchanging ideas and helping each other.

    I hope you're having a great week so far.

    Cas xx 🌷

  • Welcome to this site. I wish you well

    Sue

  • welcome, so sorry to hear about your cancer but pleased your meds are working for you. As for fatigue the only way I manage is to work part time. is this an option for you?

  • hi sorry to hear about your cancer ,did you find Etanecerpt a good biological as i think thats the bio that there going to put me on. Im on mtx,hydrox and sulfazalasine at the moment but their not working so i think Entanecrept plus mtx ,so heres hoping they work better

  • Thanks pop smith 1874

    I was on etanercept for 10 years plus and was amazing for me for all that time - was also able to forget I had RA as the symptoms were managed well. I was devastated coming off it as I'd tried and tested everything else . However , one word of advice on etanercept if you have any problems large or small see your dr just invade it's linked . It's a great treatment option to enable improved quality of life x

  • Hi Morven, sounds like good advice to check out anything suspicious or new while on biologics. I've been on Enbrel for about a year after 6 years previously. I moved counties and 'got lost' between Hospital Trusts meaning I couldn't access treatment for 6 months during which time my RA went crazy. It took a painful 3 months to get it back under control. What I'm getting around to saying is I feel for you with this new diagnosis and having to come off Enbrel. I hope there's another effective treatment in the offing. May I just ask, do they attribute your cancer to the biologic? I know we're all different and our bodies don't necessarily react in the same way but I'd still like to know. I can tolerate 2 days a week feeling lousy because I still gain 12 during which I am pretty well but I dread having cancer in addition to the RA. I've decided one disease is quite enough!

  • Hi there , I've had RA such a long time ( 33 year) that my immune system has taken a beating that with the biological they felt it was a possible cause and therefore felt the risk was too great to go back on it for now, I agree one disease is enough to deal with but I think had I not managed to get the pain and swelling under control I may have chosen to go back to it as living with that amount of pain some days was inbearable but we're all different .

    But regular checks are good and luckily I caught mine early at stage 1 n1 so very treatable :-)

  • Thanks for explaining Morven. I hope you feel better soon and stay better.

  • Hi Morven22 and welcome,

    Ali

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