Biologics

[JayneN]

At last !!!! Biologics got delivered today so seing the nurse on Tuesday .... was slowly loosing the will to live . Why does everything with this dreadful disease take so long 😩

[Hessie5]

That’s good news which biologics are you taking? I have learnt with RA you need a thick skin and bags of tolerance.

[JayneN in reply to Hessie5]

Secukinumab it’s a new Biologic it’s my first for RA I have erosive costochondritis and anklosing spondylitis so enough to keep me busy lol . Fingers crossed it works . Are u on Biologics ?

[Hessie5 in reply to JayneN]

Hi - I am on Benepali Etanercept. I have tib post tendinopathy linked with flat foot deformity due to RA. So it’s insoles, physio for strength training. Stay strong, keep us updated on the Biologic too.

[JayneN in reply to Hessie5]

U too .... good health

[karenpenn in reply to JayneN]

Hi hope it works for you. I am see my rheumatologists on Friday to discuss on starting the same Biologic. Let us know how it goes if you get any side effects not looking forward to doing them myself.

[JayneN in reply to karenpenn]

I will do lv tbh I’m a bit scared as some serious side effects . I’ve got to keep a diary for 5 months on how I’m feeling so hope it works . I just want to get off the MTX I hate it . Stuck indoors in this weathers not good as frightened to go in the sun even with 50 factor on x

[karenpenn in reply to JayneN]

Thank you for the reply JayneN

[Hidden]

That's good news for you. I hope it works well for you. I'll be interested in hearing how it goes. I've failed miserably on my third dmard and not sure what's next.

Very good health to you.

[JayneN in reply to Hidden]

Thankyou... I will keep updating see how it goes . Good health to you also .

[Nsmith13]

Yes good luck it's a long hard road fingers crossed and plenty of support on here🤞🏻

[JayneN in reply to Nsmith13]

Thankyou

[Fra22-57]

Good luck and hope this first one works and stays working for you.All stress will make condition worse.It's so annoying and frustrating having to wait for appointments then to be assessed for drug then to wait til you've been off one for so long then wait again.All that time you getting worse.Let's hope this produces magic results for you.

[JayneN in reply to Fra22-57]

I’d cross my fingers if I could lol 😂 Thankyou it’s great having the support we all need on here

[popsmith1874]

Hope it works for you, I've been on Benepali since last August was working well until December but has stopped working now on Methetrexate alongside and Sulfazalasine but need change now as hands very swollen and feet sore, I've got an appointment in a couple off weeks so hoping they'll try something else xxx

[JayneN in reply to popsmith1874]

Rrrr hope u find a solution .Ive been on MTX for 7 months but it’s awful , fatigue, hair loss , mouth ulcers , sickness . I’ve got to stay on MTX as they said it works alongside the Biologics but I’m hoping I can come off it eventually. Hope u get sorted .

[Gnarli]

Hi JayneN. Yup, you have to be patient when you you have this nasty disease. I sincerely hope your biologic is your miracle cure as it has been for so many others. I have tried sulpha and hydroxy which failed me as I couldn't tolerate the side effects and MTX is not enough. Lovely rheumy has told me I won't get biologics and the only treatment left is leflunomide, which frightens me. Too many infections, apparently. Wishing you well

J

[JayneN in reply to Gnarli]

Thankyou Gnarli. Sorry u can’t get Biologics , I think it’s unfair as I’d let everyone have it if it helps . The trouble with the Biologics is the cost but surely if it is so good everyone should have it as saves time and money in the long run.

[Treza42]

I completely agree. Your left so long in pain.. I was told two months ago. I was having biologics. Still waiting. No delivery yet and no nurse contact. Come on NHS. I am getting worse by the day. I am. On sulfasalazine and. Hydroxchloroquine. About to start Benepali as I tried lefflunomide made my hair fall out. Methotrexate gave me hives. So can't wait to be pain free. Even tried turmeric powder and tea and it's not helping. Gggrrrrr fingers crossed its good for u. Xxx

[JayneN in reply to Treza42]

It’s awful waiting around I waited 12 weeks for my Biologics it’s so wrong . Hope u hear about them soon x

[Hidden]

You re so right Jayne about everything taking so long to work/side effects to subside: i feel like I ve just wasted the last year ... well, waiting, really. Hate trying new drugs because same all over again, so frustrating. I hope you finally hit the jackpot with this one: good luck x

[JayneN in reply to Hidden]

It’s an awful disease for anyone to have . Tbh I’ve had colitis for 18 yrs and gone through skin cancer a cpl yrs ago and I thought I’d gone through a lot with them but nothing compares to this . Just the constant pain we are in 24/7 the tiredness, hair loss, mouth ulcers, joint swelling and not been able to move. I have gone from being an area manager working 60+hrs a week driving all over the country , I had a great social life and great friends . I’m not not able to work, I have no social life whatsoever and I feel like I’m a recluse , all within the space of 16 months . How people who have had this years cope I honestly don’t know . I take my hat off to them . But honestly hope that the Biologics work, I’m at the hospital in the morning for my first one so fingers crossed xx

[Hidden in reply to JayneN]

Goodness Jayne, life is so unfair sometimes, haven't had anywhere near as much to bear as you; it's a constant worry as AI diseases do cluster. Truly is horrid disease, i had no idea before I had it as media coverage and u derstandi g is so poor. Tbh there are days i wish i'd never heard of it, get so fed up of it taking over my life. I ve only been diagnosed 10 months; think i had it longer tho' and like you don't know how others cope long term. Sending positive vibes and fingers crossed for you: sounds like you re overdue some good luck x

[JayneN in reply to Hidden]

Thankyou Kerena I hope u get sorted soon . Xx