Totally fed up

HI Guys,

Sorry to be a moaning minnie but i feel i have to let off some steam, as i feel thoroughly fed up. I have just had my report back from the consultant and as usual that tells me more than they do in the clinics. I have found out that not only do i have sero-positive ra but also have secondary osteoarthrits. They have now added hydroxycholrogqine to my list and i have no problem with sulfasalazine and methotrexate but now with this new drug iam feeling constatly sick and dizzy and have had really bad pain in my neck and shoulders and feel like giving up. My hubby is good and tries to do his best but he does not really understand.

They have also mention biologic therapy which i dont really know much about and will worry about later. I feel like my body is giving up on me. I am normally a upbeat kind of person but this is getting me down. There i have got that off my chest and now i will keep going through all your blogs for inspiration

Take Care

Carol

8 Replies

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  • Carol,first off your not a moaning minnie, but i certainly understand why your so fed up. I fell like my body has let me down. Now i've been on steroids for a long time and the weight has piled on and it upsets me when my body won't function like i would like it too.

    Being fed up is not odd as a lot of us feel like that,but not being told whats wrong is another story all together. We try and cheer each other up when someone is down and fed up. there a load of good people on here and i'm sure you'll get plenty of inspiration.

    Sylvi.xx

  • Hi Carole, Please don't get too dejected as I've been in a similar position and it can get better. If you get the chance of biologics grab it as it has made a big difference to me and my drug programe. I'm on rituximab infusions and so far so good. I still take MTX and anti inflamatories but the dose is lower and the results are better. I also have osteoarthrits quite progressed and for this I'm having an infusion of Ibandronate every 3 months. It's just administed by day hospital and takes only 30mins total. Much easier to take than alendronic acid which damaged my gut so if you get the chance ask about it.

    Have a look on NRAS website at the info on biologics as it's very informative and then you know what the doctors are thinking when they start dicussing it.

    I hope you start to feel a little better soon but a good moan does us all good now and then. I often have a good weep and then come up feeling better.

    Big hug and I hope tomorrow is a better one for you

    Love Sue x

  • ahh,you poor hunny,

    am new to this and can only console you as best I can with a giant hug over the comp.Have also had problems with meds,and know just where you are coming from when you say that you feel your body is letting you down,like Sue I find a good sob does help,you can even let rip a few screams, (I do them into a towel so no one hears,! )

    Heres to a better day tomorrow for you.

    Jill

  • Hi Carol, I very strongly suggest you take up the offer of a Biologic when you can. Recent research is backing the theory that the sooner RA can be slowed down or stopped in its progress, all the better in avoiding joint and bone destruction. Normally used along with Methotrexate and/or atleast one other DMARD, the benefits are well worth it.

    Actually there are fewer side-effects with biologics, almost not noticeable. Your bloods will be monitored for liver enzymes and kidney function, and Red and White blood cell counts.

    If not offered by your Rheumy consultant, by all means ask, even push to encourage use! Current literature from both sides of the Atlantic support this.

    All the best. L.xx

  • Hi there,

    I'm on the same drugs as you (MTX, hydroxy and Sulpha) and it's working reasonably ok, tho' it took quite a while and I still have bad days. So at the moment there's no possibility of biologics for me - but from all I've heard if I was offered them I'd jump at it! Everybody seems to say you get used to injections pretty quick, and the downsides to them are not common.

    So please don't feel that your body's giving up - it just needs a bit more help. And believe that it will get better, as it will.

  • Yes just to join in and support you and agree with everything you are being told here. I'm only on MTX and am worried it's not enough and everything's going too slowly so will be interested to try out Hydroxy if an when I'm offered it as I had a really bad reaction to Sulpha and had to come off it. As everyone says I think the Biologics sound like the most effective option from everything I've read on here and if you are offered them then probably best to say a firm yes but it's your choice. Really just wanted to say count me in on the collective hug - I'm sure it will get better and you're not just moaning we all understand. TTx

  • A biologic can be a great opportunity for improvement if you are offered one, go for it!, trying to find the best treatment can be a battle, but hang on in there xxx

  • Thank you for all your wonderful advice and collective hugs, i very much appreciate it and i will definately look into the biologics.

    Love Carol

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