Gone from bad to worse !

Hi Everyone

Well I had what I thought was a bit of a flair up and had a holiday booked and went hoping that the rest n the sun would do me good, how wrong could I be ! I'm a million times worse . My holiday was spent stumbling round like a 90 year old .totally embarrassing, and now I'm home I can't walk at all .I've been and had x rays done On my wrist n my knee and my doctor has put me on new pain killers and he thinks my methotrexate has just stopped working. So I have appointment with my consultant on the 29th June as my rhumy nurse upped my methotrexate to maximum and still no improvement after 3 weeks , on my appointment shall I really push for new meds n which one should I push for. And roughly how long will new stuff take to work. I have had to go On the sick which I totally hate doing as prefer to be in work but I have completely lost my mobility and now virtually house bound. Any advice will be most welcome and I'm even thinking to try n see my consultant on a private appointment if I can get in earlier than the 29th June.

Thanks guys

Dee x

12 Replies

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  • Thank you .

    Gosh today cant walk at all I will look at that link you sent me. Going to ring my consultant secretary today to see if any cancellations and try to see him earlier.

    Xx 🐺

  • Thanks

    I've just looked up that and I see where he is coming from. But I go on all incusive holiday every year and never had anything like this but I do agree some foods do set me off .

    So it's something I'm going to look into .

    D xxx

  • Oh I got to that state where methotrexate stopped working even on highest dose. Steroids were all I could do to help with pain but decided to come off them due to bone problems. I was put forward for biological drugs which seem to be helping many others who have reached the end of other drugs working. These drugs are expensive and funding has to be applied for. I have just started mine and hope to see some improvement in the coming months. It can take a while for them to kick in. Ask your doctor about biological drug options. Good luck!

  • Thanks for your reply

    Really appreciate it . It's just playing the waiting game now as I'm literally house bound at the moment. Hopefully they will sort me out rather than try something similar to methotrexate as that's not working . Thanks again xx

  • Hello Denise,

    So sorry to hear you are suffering, dont lose faith. Its hard when you feel trapped and isolated and cannot do things you use to do - been there and got the Tshirt.

    Housebound for months on end while new treatment after new treatment did nothing. But do not loose hope. It has taken my third biologic in a year to find something that works. I am up and about, cycling ,walking and feeling great!!!

    There is a protocol which usually means that they try you on the oral DMRADs before offering the biologics - at least in my part of the country that is the case. I was offered them within a year of being diagonosed but as I said it has take up until 4 weeks ago to get one that works. I still take MTX along with tocilizumab which is a 4 weekly infusion. In my part of the world - Scotland there is no waiting for approval we are funded fully for biologics.

    Very best wishes

    Keep on keeping on - I know its hard but there maybe a treatment out there for you x

    Chez

  • Ahhh thanks so much yes I think I'm on a very long Rd to recovery but with all help and advice I'll let get there hopefully. Xxx

  • Oh my darling i don't know what to advise you to do,but i will send you a hug.xxxx

  • Ahhhh thanks xxx

  • 💝😪💝

  • Hi Dee. I am so sorry you had such a painful time on your holiday and since you came back. It may well be that your medication needs changing but no-one can tell you which drug to ask for. The Rheumatologist is the only person who can do that. There are many drugs on the market but it is horses for courses. What is right for one person may not be right for another so your rheumatologist will try what he/she thinks is best for you and your type/severity of the disease. I hope you get the right drug soon. Best wishes.

  • Thanks

    I'm just hoping n praying they fix me quickly as can not stand this it's a living hell.

    What do you take n what do you take if you have bad flair up .

    Tell me to do one if you think I'm too nosey ha ha xxx

  • Of course I don't think you are nosey. That's why we are here, to help each other. I take mxt but I am in drug induced remission at the moment so when I have flare ups I just take paracetamol because they aren't that bad. When I used to be really bad I had steroid injections which worked well for me. I do know that the strongest over the counter painkiller is co-codamol but if you get those ask for some lactulose as well as they make you very constipated and you don't want that on top of everything else. I hope you find something to help you soon. x

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