Infliximab has failed, onward to Rituximab! - NRAS

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Infliximab has failed, onward to Rituximab!

Dogrose profile image
9 Replies

Right now I have an iron plasma count of 2.8 and a CPR of 54. Bye bye Infliximab. I saw the Rheumy nurse a couple of days ago after finally overriding my severe phone phobia and calling the rheumy helpline. She thought maybe Enbrel but my Rheumy says Rituximab so more blood tests, more X rays, more MTX but only 2.5 this time (if I feel too bad on it I'll stop taking it, the world won't stop turning). The nurse says my veins may be rubbish because I'm so anaemic (I'm having trouble being canulated and having blood tests), I have to go on super duper iron girder pills for a while so hopefully they will work and make me feel human again. Maybe I should eat more chocolate too? :D

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Dogrose
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9 Replies

Really pleased for you Dogrose - well done for overcoming your phobia and phoning the helpline. I know people who have had their life transformed for the better by Rituximab so I really hope you become another one. And go for the chocolate (dark stuff is full of iron!) you need it!

Barrister profile image
Barrister

Definitely chocolate! Clemmie

nomoreheels profile image
nomoreheels

Well done you. I'm so pleased you got there & sure it must have taken a lot for you to gather all you have to do it as I remember from a previous post how bad your anxiety is. Let's hope that this is the start of a turnround & you start feeling better.

Lots of choc for you, the very best. At least you have an excuse & ..... you deserve it! x :)

Hello

Blood test and me do not get on I am afraid.

Now near sixty four in the past my past GP was trained as a hematologist so he used to take my bloods for the hospital as they just played darts with me.

Now I am in a new area and I feel lucky they do manage most of the time, with a catheta

All the best

Hello

Blood test and me do not get on I am afraid.

Now near sixty four in the past my past GP was trained as a hematologist so he used to take my bloods for the hospital as they just played darts with me.

Now I am in a new area and I feel lucky they do manage most of the time, with a catheta

All the best

Dogrose profile image
Dogrose

Thanks everyone! After I saw the nurse (she was way better than the rheumatologist and really got things moving) I had to have another blood test, he couldn't find a vein and said he needed to try my other arm and I just lost it, after three and half years of constant blood tests I had had enough and burst into tears, I was very apologetic as it wasn't his fault at all. sometimes it is all too much! I have to have yet another blood test and another chest X ray before starting the Rituximab. x

PS I really can't stand bitter dark chocolate, which means I will have to have lots more milk chocolate to get the same amount of iron.

farm123 profile image
farm123 in reply toDogrose

Last year when I was having to go for infusions - first Ritux then Tocilizumab they must have thought I was loopy - any little thing and I was in tears so you are not on your own there. If you can build a good relationship with the rheumy nurse it will help in the long run although I can hear the dread in their voice when I ring the helpline as they know there must be a problem.

Now I am slightly better controlled and self injecting at home it is not quite as bad.

Hope it works for you. Farm

hatshepsut profile image
hatshepsut

I do sympathise with you over the blood tests! My gp turns pale and sweats buckets if there's any mention of blood tests for me! Nobody at the surgery, phlebotomist, nurses, doctors, can get my blood. Phlebotomist, nurses, failed at hospital.

I should attend a MTX clinic every 4th Monday, but I have to go the following day, because the only nurse that can do it doesn't work on a Monday. She gets it from the back of my hand! Lord knows what will happen if that tiny vein collapses! Nightmare!!!M x

hatshepsut profile image
hatshepsut

PS Hope you enjoy the chocolate!!! M x

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