change in biologicals

[cozzycoz]

Hi all,

It’s been along time since I posted, I do read a lot of post which I find useful, but rarely have the time to post!

I am currently off work due to change in meds again! I am currently on leflunamide as became intolerant to mtx it’s has been alot better, although swapping was a nightmare waiting for it to work! I was also on Filgotinib after being taken off rituximab , after much confusion mid understanding from the Rhuemy team!! I felt a bit pushed into trying Filgotinib, having tried it for 6months I felt this was not working as well as Ritux had! But was persuaded/ told to wait & see, after lots of struggling with inflammation in hands & painful shoulder, had to have more time off work and became very low.

I called NRAS helpline, this was my first experience talking to NRAS & I haven’t say the lady that I spoke with was great, she helped me take control of my situation and I went ahead and wrote an email to my Rheumatologist to explain how I felt about what had happened when I was taking off Ritux, which was in short, that I felt not listened too at my appointments , asking to have Ritux alit sooner but getting pushed back and told to “see how you go” … every 3months until it’s been more than 1& half years since my last infusion, because my bloods looked good! They didn’t take any notice of my swollen hands or pain, telling me to go to GO for pain!

eventually I got them to try for funding for ritux ( apparently the next biological therapy is very difficult to access, requiring a lot more work from Rheumatologist, she told me this herself saying”but I will try if you want to” I had the feeling she wasn’t keen! ( I have had Humira, ritux & Filgotinib now so not much choice left for me )

My Rheumatologist says “Ritux is slot cheaper now” so will try! So about 4weeks ago I ran out of Filgotinib, & started deteriorating, fairly quickly, I got the funding approved and have my 1st Ritux on 21st October I am counting down the days/mins/hours, barley sleeping, struggling to rest, on co-codamole highest dose, pregablin,, using voltrole, heated shoulder pads, it’s a living hell, I feel like I’m being tortured everyday/ night!!

fingers crossed the Ritux does what it did last time I had it 😮‍💨🤞🤞🤞

[HeadInASpin]

I'm sorry you feel so terrible and can understand how this awful disease brings you down. Well done for reaching out to NRAS and for taking control of the situation. I have no advice but I just wanted to say we all get it, you're not alone and to wish you luck with the treatment plan now in place. Xx

[cozzycoz in reply to HeadInASpin]

Thank you ☺️ means alot. just wanted to share in case anyone else feels like going back to a biological they have tried before & to reach out to NRAS helpline if needed ☺️

[Zip1]

fingers crossed for the 24th and hope that it kicks in quickly for you….

[Polo22]

So sorry your having so much to deal with and hoping things get better for you soon. I am new to this journey, well sort of , been, in hindsight having troubles for sometime but only this year got to see Rheumy . Been having Hydroxy since May if anything things seem to be worse, taking lots of co-codamol and voltarol gel, a woman who previously was reluctant to take paracetamol. Have phone appointment early November hoping for some better options. Hope they listen to you , and you get a better quality of life back soon

[cozzycoz in reply to Polo22]

Hi Polo22,

Thank you, it sounds like you’re not having a great time at the moment either! I now you have an appointment in November, but do you have a number to call the rheumatology nurses ? Only as when I have called when struggling they have brought appointments forward, especially when you say it’s impacting your quality of life.

It sucks taking lots of painkillers but when nothing else touches it needs must, it doesn’t deal with the actual condition just helps block the pain a bit, so you really need some better medication to help control R.A , make sure you prep before appointment if you feel like you need more options ask,good luck with your appointment x