New trial

Posted , 6 users are following.

HI everyone, not been here in a while, hope you are all well!

I have been doing really well on Methoject 20mg weekly and Hydroxychloriquine daily for about a year now. Went to my rhuemy appointment last week and he asked if I wanted to take part in a trial which involves stopping all meds all together, immediately! Apparently, similar trials have shown about 50% of people in remission, like me , have had no return of flares, whilst the other 50% have had to go back on meducation.

Just wondered if anyone has any experience of this?

Thanks in advance for any advice

0 likes, 12 replies

Report / Delete

12 Replies

  • Posted

    Do you know what the name of the medication is and was it a shot, pill or infusion. Also are you in the Uk or US?

    Report / Delete Reply
    • Posted

      hi Jo, There is NO medication offered, you just stop all current medication and they monitor you regularly as a follow-up , with an assurance that you would be seen urgently should a flare up occur. They also mentioned doing biopsy's in any affected joints that flare.

      I' m in the UK btw......thanks for taking the time to reply

      Report / Delete Reply
  • Posted

    Can't say I've heard of anything similar, but would be interested to know how you get on if you decide to go for it.

    best of luck!

    Report / Delete Reply
    • Posted

      Thank you! I am keen to give it a go as i hate taking these meds, although, to be honest, i havent had any problems with them.

      I just cant get my head round the 'remission' bit, as i was only diagnosed two years ago and was expecting to be taking meds for the rest of my life to keep symptoms at bay. Not knocking it though, I will be delighted if it works,

      Report / Delete Reply
  • Posted

    I think it's worth a try. I don't take any of that - just paracetamol once or twice a day and meloxicam once a day. But I do take lots of omega 3 in lambert fish oil or through tins of tuna daily. so that helps inflammation so do take it if stopping me d's. I am on cbd which I find brilliant but it is something you have to get into your system gradually. overall I have gone into remission doing it more naturally and completely changed my diet (all sugar is a real killer to my joints) so my immune system isn't compromised. Thing is, we have to understand and manage flares and accept our body is impaired. I feel far better now and was diagnosed in 2014. Gradually I am getting back to my old self!!

    Report / Delete Reply
  • Posted

    Thanks for your reply Ivy! I defo need to change my diet, sugar is my downfall I'm afraid ! Have also considered cbd, however, my rheumy was dead against it

    Report / Delete Reply
  • Posted

    HI again, would you please let us know your progress, when u have time., I think everyone would like to know how its going for you. My husbands rhematologist is up on the latest and I will ask him about this. I think the US is a little slow on new types of treatment. thanks again and I wish you the best.

    Report / Delete Reply
    • Posted

      Thank you so much Jo, I will of course post an update on the outcome of the trial. I think it will be a couple of weeks before i stop the meds, they do a written questionaire first, then a thorough examination of my joints, ultrasounds and bloods as a baseline to monitor any changes. Then, hopefully, I will stop ........fingers crossed it works!

      Thank you again, and I hope that you continue to do well in your current regime 

      Report / Delete Reply
  • Posted

    Anything that can get a move away from the meds has to be worth a try!

    I still cant work out what triggers my pain. I've not had a major flare up since my initial diagnosis 4 years ago, but the randomness of the pain is confusing. I will have been fine all day and then suddenly the pain comes out of nowhere.

    I hope it works out well for you! please keep us posted. I wish my consultant was more forthcoming with info! It all feels like a box ticking exercise when i have my annual checkup!

    Fingers crossed for you!

    Report / Delete Reply
    • Posted

      I felt the same Nabs, each appointment feels like they just want you to say what THEY want you to say so they can tick the boxes. I also only had one major flare right at the start, the rest of the 'episodes' are so random and involve different joints that I often feel that i must sound like a hypochondriac when i describe my symptoms! I think being offered this trial has heightened this cos I'm now thinking " am I cured? did I even have RA?? " lol! time will tell I suppose.....will keep you posted on the outcome

      Report / Delete Reply
  • Posted

    Yes I am in remission. I was under medication methotrexate hydroxy chloroquine prednsolon and folic acid for more than 18 months. I was doing fine but suddenly I started feeling nausea and high heart beat. So I tapered the medicine gradually. After 6 months I had a lab test which showed my RA factor as negative. But my Remy advised me to continue hydroxy chloroquine 200 MG one tab daily.

    Report / Delete Reply
  • Posted

    HI everyone, thought I'd give you all an update in the BIOFLARE research trial i agreed to take part in.

    I came off all treatment (Methotrexate injections and Hydroxichloroquine ) on 14th MAY . Everything went well for the first couple of weeks then , BANG! straight back into a full flare-up! Hands, elbows, wrists and shoulders all have given me great pain and discomfort over the last two weeks. Tonight I am at work and really struggling with shoulder pain and now my left foot has started to swell .

    At first i thought it was just a 'blip' and would settle down, unfortunately that hasnt been the case and i was taken off the trial last week . I had ti have a steroid injection then too, which, alas, has had no effect whatsoever!

    I am now waiting to be re-referred back to my rhuematologist.

    At least I know now that the drugs were obviously doing a great job of keeping mt symptoms at bay........as they say "nothing ventured, nothing gained" it MIGHT have turned out differently so was worth a shot.

    Hope you are all well and winning the battle!!

    K

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up