Hello lovely people. Just after some pick me ups and friendly words really. I’m currently sat at home feeling very miserable when I should be at work, haven’t had to take a day off sick for a while. I’ve recently started Lefluonimide (or however it’s spelt!) been two months now and I haven’t had any effects at all either positive or negative. I have tried every medication out there and nothing seems to work for my RA 😭 I had a Rituximab infusion which worked and I was symptom free for four years! Then I had my second infusion and it didn’t work! So my options are Lefluonimide and if that doesn’t work then injectable methotrexate, which fills me with absolute dread and fear!! I started with MTX tablets years ago and had the most horrendous side effects and no positive outcome. So I just feel a bit frightened for my future, if this Lef doesn’t work then I’ve got one option left, the dreaded MYX injections! But if they don’t work either, then what!? Pain relief and pain management until I have to stop working, have surgery on my joints and all sorts 😭 I’m 28, had dreams of travelling and diving and staying active. I currently just about manage once weekly horse riding, sports and walks with my dogs, but I am finding things increasingly more difficult. I imagine all of these things will be either impossible or very difficult for me to manage in a few years time.
I’m usually very positive and upbeat about things and keep a positive mental attitude. I know people have it a lot worse than me, I remind myself of that frequently and how lucky I am to just have bad knees, feet and hands, I know many of you have a much worse time than me. Just struggling to stay positive at the moment.
Just feeling worried and crappy 😔
Sorry for my long rambling post! Thanks for reading.
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EmLem89
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I was told by my consultant they all do the same job, reduce your antibodies, and the Rituximab did do that, after my second infusion recently my bloods showed very low numbers so on paper it worked but I was still having symptoms 😔 my consultant said it was really unlucky, as usually people have plenty of infusions before it’s ineffective, not just one! Never mind, it is what it is. So I’m back to my personal drugs trial, starting with Leflunomide. I have read about the JAK inhibitors so I think I shall mention that when I see her next month.
Thanks so much for reading and replying, makes such a difference having people who can relate 😊
You might like to consider calling the NRAS Helpline, they have lots of information on medications for RA and can talk you through your worries and concerns. You can contact them on 0800 298 7650 Monday to Thursday 9:30am-4:30pm or email any time to helpline@nras.org.uk.
Thanks Kim, I keep meaning to ring and talk to someone but I keep putting it off...don’t really know why! Perhaps I will tomorrow if I still feel like this.
Oh bless, you have got yourself in a right to do. I initially thought like Nettie, why after only trying one biologic is that it for you? I admit I'm not totally au fait with the guidelines regarding a biologic failing you & your options thereafter but we read here of members progressing to others, very few reach the end of the line. Is it your Rheumy who has said your only options are a backwards step to traditional DMARDs? Has he not discussed the newer JAK inhibitors for example?
Leflunomide was my 4th DMARD & unfortunately it did nothing to help me, though it did cause neurological problems. I'm still on MTX, 9 years now, 8 of them injecting. You may find if you do go on it that you tolerate injections better, many do, & if they start you on a low'ish dose & increase it gradually until your suitable dose is found, & a happy medium between control & tolerance that may make a difference too. The amount of folic acid you take can be finite as well, so if you weren't taking enough previously maybe that's why you had such a bad time on it? You never know though given we've to give DMARDs around 12 weeks to reach full effect & you've another month or so to see if LEF is going to be helpful so you may be worrying yourself needlessly.
Have you thought about ringing the helpline? They may be able to settle your concerns, worth a try? The number is 0800 2987640 Mon-Fri 9.30-4.30, free from a landline.
Treat yourself to some choc or whatever your go to comfort food is, stick on a film, a box set or a good book you can lose yourself in & snuggle up on the settee. Things aren't that bleak you need to be worrying about joint replacement just yet.
I have read about JAK inhibitors, so will put it on my list of things to talk to my consultant about. Thanks so much for your reply. Just need to vent sometimes as it’s hard sometimes to keep it all in and keep positive. I was told Mtx injections are tolerated better than the tablets so if I’ll just keep an open mind and cross my fingers. Like you say I’ve got a bit more time with the Leflunomide to see if that works.
Thanks so much for replying 😊
Sorry to hear you are feeling so fed up. I agree with the other posters, there are other options out there, so do what you can to pamper/nurture and give yourself loving care until you find the way forward with different meds. No fun being young and stuck with RA I am sure, and you are totally justified in feeling less than upbeat at least some of the time. Everybody out here feels for you.Hope you feel better soon in every respect.
Hey I'm taking methatraxate injections now n they r better than the tablets for me, I had horrible side effects on tablets. It's the only meds I have taken so I've not got much to compare it to but hope that eases ur mind abit at least. Hope you have a better happier day tomorrow! X
Hi there, So sorry to read your feeling down. I think it would be good for you not to compare yourself to others. It doesn't matter if anyone is worse off than you ( maybe they are/maybe not) What matters is YOUR journey. Each of us should respect one another and our different journey with our AI Disease. Feel free to say how you feel.
As for meds, has your rheum tried you will all biologics? and has he/she told you the last resort is methotrexate injections?
You are young and of course you have dreams, I think we all do regardless of age. You are maybe just having a bad dream just now and seeing a bleak future when that probably isn't the case.
There are a lot of new drugs to control RA. Im on Baracitinib and doing quite well - not perfect but getting there as time goes on. Eating well and exercising.
Swimming is great as no weighbearing on joints. Brilliant re horse riding and the dogs. They will keep you upbeat for sure!
Hi. What a dreaful disease this is. At the end of the day it’s not curable and dealing with it mentally has been the biggest challenge from my experience. (4 years in and no real improvement)
I found the counselling service offered by my GP helped with the way I view this horror. Speaking to someone neutral with no agenda was a release....she had to listen! It doesn’t change the disease or pain but for me it helped manage my depression. It also helped me come to terms with friends leaving when I couldn’t join in with plans and with my living and being alone.
Whatever you try, remember you are not alone, this site is full of wonderful people, and you get to decide what works for you, medically and socially.
28 is so young to face all of this when your 20s and 30s should be carefree and so I can understand that you feel pretty fed up. I was 38 when my life changed one Saturday morning. I’m 65 now. I’ve been lucky and had remissions and you may too I hope. What has helped me to keep going is yoga ( when I can ). It lifts my mood , gives me energy and most importantly a sense of peace. Reflexology has helped me too for the same reasons. Wishing you all the best EmLem.
Sometimes you can’t see the wood for the trees when you’re feeling out of control. This disease does make you feel like that, it seems it’s controlling you. The good news is that there are many treatments out there which you can try, including biologics. You will be able to try others . It might be worth looking at holistic treatment too and yoga or Pilates which will help with strength. I’ve certainly been through it myself, I’m now on my 6th biologic and looks like I’m developing an allergy to it. So it is the road for me, you are at the start. You will find a treatment that works.
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