Week 4 of Biologics and after feeling a little better this past week I’ve never been so ill in my life . I honestly thought I was going to drop down dead ! Horrendous stomach cramps all my joints stiff and painful just no energy whatsoever. My stomach looking like I’m pregnant . Rang nurses now been told go to my doctors and stop my Biologics as I’m bleeding from my bowel so now got to go back through gastro (having Colitis for 18yrs and no fare ups in 4yrs) not happy but I’m now thinking of taking myself off all the meds and trying something else myself . Like everyone else I’m sick of the pain , fatigue, sickness, hair loss and tbh with taking Methatrexate and having this gorgeous weather and not being able to sit in the sun is horrendous. And on top of all this the dreaded PIP assessment on Tuesday #iwont bebeaten 😀 moan over ....
Fed up 😕: Week 4 of Biologics and after feeling a... - NRAS
Fed up 😕
Try not to despair .Would say you need to see the Consultant and get your meds changed there are many more to try.The methotrexate did nothing for me and I was glad to get off it.But definitely try to see a senior DR to get this sorted as quick as possible.Take care things will improve.
Thankyou Patricia1193. I’m seing the consultant in 2 weeks so see we’re I go from there . Thankyou for your reply .
Thats good news Jayne.You have an awful lot to put up with and for a very long time but I really believe something will be sorted.Is methotrexate the only thing they have tried ?
I’ve had lots of steroid injections under ultrasound into my joints . I can’t take steroids in tablet form as with me having Colitis I’ve become immune to them . I tried Sulphazalasine but had a bad reaction so been on MTX around 7 months in injection I take 150mg Biologics, naproxen and zapain . I’m not one to give up and very strong willed after having Colitis and skin cancer I can survive most things but this is another level to anything I’ve ever had . It’s the upheaval to things we take for granted and the change in lifestyle is horrendous. But onwards and upwards ....
Honestly Jayne when I read what you have been through I feel ashamed for feeling sorry for myself.The worst thing apart from the terrible physical pain is the uncertainty and waiting.Sometimes you go along and things not too bad and you live every minute and try not to think about the future but is hard.Take care and thinking of you.
Don’t be daft ... lol 😂 we’re all in the same boat . There’s loads worse off than me you just have to think positive. Even the strongest of us which I thought I was until this awful disease get down and feel sorry for ourselves I’ve done it many times but you just pick yourself up and carry on . The thing that does me is the active lifestyle I used to have only 19 months ago now I’m nearly a recluse .... but hopefully there will be a miracle for us all one day .... good health to you 🌹
Hi Jayne Cannot stop thinking of you and what your going through but I do believe the right combination will be found.It is all this trial and error and what you have to go through to get there.I was in a wheelchair before they started me on infusions of RoActemra .The year before that was a nightmare.Things improved RA wise but lots of problems with my stomach.Just been told to stop drug as neutrophil levels very low so yet another waiting game.Yours is much more complicated because of the colitis .Take care and go with it until sorted.Hugs your way.
Omg UVE been through some tough times also . I hope you get sorted and eventually and hopefully sort everything re your health ... lovely talking to you 🌹
Lovely talking to you too.Much worse for you as you look very young.I am 58 and it only happened at 56 so grateful for that.Good luck with your appts.
I’m 51 so not that young 😊
Well you look a lot younger.Certainly not ill.
Ha Thankyou that picture was 20 months ago just before I got ill .
I was moved by your experience and my heart goes out to you. I’ve been having quite a few struggles with side effects to meds and other health issues along with a nasty sunburn after being outside in the shade not wanting to waste a beautiful day ☹️ I share some of your frustrations. Hugs to you and hope for better days for you.
Aww Thankyou so much for such lovely words . But we’re all in the same situation on here , some worse than others but we have got to keep strong and keep fighting this dreadful disease . We all have down days and days we’re we feel like giving up but you just have to get on with it . There’s millions of people worse off than us although it may not seem it at times 🌹
Well if they see you like you are you will get pip straight away darling. I don't have a answer for you re; coming off meds though i wouldn't do it. I hope you soon feel brighter darling.xxxx
This is the problem tough disease, medication, is also tough, side effects, people don't understand what it is like unless they have the same disease or medication problems, I am hoping to try and get biological treatment one day but after your post I'm now not so sure!, but having being flaring almost constantly since Nov I'm getting desperate.
Hoping you get sorted, what didn't make me bad and worked for 18 months was the less common gold injection x
Hi Summer32 id definitely recommend u try Biologics. I’m probably a very small percentage of people who have a reaction . It’s a brand new Biologic I’m taking so could be that it’s not compatible. I’d definitely try others if it gets me better . What I don’t like is the thought of taking all these different meds , it can’t be good for our bodies surely ? I hate the MTX it stops us doing so much . I’m at the doctors tomorrow as my friends just said a nasty stomach bug is going round so I’m now wondering if I’ve had that and thinking it’s the Biologics.
My heart goes out to you - My Rheu Con switching me to Baricitinib - one tablet per day, next month. Due to Sulfalasazine no longer effective after 5 years or so.
He reports Baricitinib has had great results.
You poor thing. So sorry to hear this. If you do take a meds break be sure to keep having your blood monitored. Maybe have a depo to give yourself a break first?
Injectable prednisone which is a steroid. Great for acute situations but not good long term. Many of us find they bring great relief.
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