I’ve been called in to see the Rhumatology nurse today to change all my meds as things are not working. Have tried Abatercept now for 9 months and I’m still swollen, hurting and knackered so they’ve finally listened to me. Got my concerns as always with starting a new one (this will be my 4th biologic and 4th DMARD) I’ve been down this route before but remain hopeful and positive that this combination will be the one. Tocilizumab and Azathioprone. My body doesn’t react well to DMARD’s at all. Fingers crossed and any positivity would be welcomed. I need to have the energy for my 3 children both mentally and physically and become a ‘normal’ person that can participate in life!
Sarah xx
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sjhewitt42
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Good luck. I know the apprehension and hope...well suppressed....that you will be feeling, I am now on my 5th biologic, abatacept, and touch wood it seems to be beginning to work. It's like standing on the diving board, trying to step off, and being terrified that you'll have a bellyflop.
I'll be keeping my fingers crossed for you.....do let us know how it goes.
It will be so good when we can have treatment tailored individually for our particular immune problem instead of this trial and error business. I feel for you in your frustration and concern 'Will this one be the be one that works?' Good luck anyway.
I agree - would be lovely not to be a guinea pig. xx
Bless you. Can't imagine managing with kiddies. Good on you for staying positive. I don't react well to dmards either...they stink! Of course they work well for sone folks.
Keeping everything crossed thst the next batch of drugs works like a dream, and you'll get your life back.
Good luck, know how tough it can be with little ones.
For what it’s worth I’m not a friend of DMARDS either, and am currently on third biological (Humira) after Infliximab (had reaction) and Enbrel (didn’t work) Humira has worked very well for me so far for a few years, so there is always hope.
Good luck that this is the combo.
🙏🏻
Really good luck Sarah, hope it’s one for you, it all gets a bit soul destroying and i’m only on third drug and first bio! Really feel for you with young children, so glad mine were grown when I got it(even tho it does mean I am old git now😊), take care xxx
Thank you all so much for your replies. I’m so frustrated.. my whole journey from diagnosis has been hindered by my totally incompetent rheumatologist and staff. Seriously I could write a book on the amount of times I’ve been told that things are being sorted only to turn up to find results have been lost, there’s no notes on the system etc etc. People not doing what they have promised. Basically the nurse didn’t know a thing a bit starting new meds despite me seeing the Consultant in August! My blood test was lost 3 weeks ago so I had to repeat last Friday to start the Az they once again have no results!! The funding form hasn’t been filled in for the Toc so bugger all had been done. The nurse told me he would sort by this afternoon and ring me to pick up prescription and no surprise he hasn’t. I’ve also had no info about either drug. A complete waste of time and meanwhile I have to carry on! Sarah xx
Hi Sarah. That is gross negligence! Could you go back to your GP and change consultant? You have enough on your plate without this. My kids were 3 and 8 years old when R A struck. I’m not a driver and I look back at those days of struggle, pain and utter exhaustion ( not to mention despair and some depression ) and think ‘ how the hell did I cope ?’ I think love of our kids keeps us going. I changed consultant 3 times. The 1st one was a woman who belittled all the elderly ladies. We could hear her as we waited our turn. Her whole attitude was negative. When I told my GP he said ‘ right. That’s not on. We’ll send you to the dr I was a registrar for.’ He was cold and patronising. At my last session with him when both my knees were swollen and walking was hard I asked politely if I could have an x ray to check if any damage had occurred. He threw his hands up in the air and shouted at me and stormed out to organise it. His nurse came over and put her arms round me, ‘ You don’t deserve that my dear.’ My 3rd consultant was super and the one I have now is too.
So Sarah complain. Nobody should have lack of care like that. I’m a grannie now . Life will get better. You will get there.
Do not loose hope Sarah. It took three years and many drugs but I have found one that works. My heart goes out to you. I could not imagine how difficult it would be to still have children at home.
I have started walking to build up strength. Having others to focus on will be a great motivator during more trying times. I sincerely hope this is a winning combo for you.
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