The day to choose

[Rarah]

Well the day has come. I have an appointment to choose which anti TNF I wish to have next. Both toxicilumab and retuximab are on offer. I still don't know which Is best.

[sylvi]

Best of luck darling.xxx

[magglen]

i am sure you have discussed it with your RD consultant or nurse and weighed up the pros and cons re side effects? After that I suppose it is a matter of trying one out and see how it goes. I think there is not much difference between the two anyway but you may tolerate one better than the other. I hope, which ever one you try, it goes well and you will very soon feel a lot better. All the best xx

[Sunflower62]

Just to throw something else in the mix!! I had a depo injection on Friday the difference is turely amazing all my jointS have gone down well worth asking for one while you wait for the new drugs to kick in hope you get on well...remember don't take to anyone in the waiting room about your drugs we are all different hey xx

[funkyfran in reply to Sunflower62]

I'm afraid I'm 'guilty' of speaking to anyone & everyone in the waiting room....gained some of my best info that way....especially regarding my dodgy consultant....verifying my suspicions!

[Rarah in reply to funkyfran]

My confession. I'm clinical sister in our outpatients so as much as I really would chat to the waiting room my work colleagues (I've been off now 7 weeks) kept me busy.

[funkyfran in reply to Rarah]

Do you think you receive better treatment as an 'insider'?

[Rarah in reply to funkyfran]

I get treated as I expect all patients to be treated I do get excellent care clinically

[funkyfran in reply to Rarah]

I wish! I have been 'treated' disgracefully by my local hospital. The consultant has a god-like status & 'patient-led' is a fallacy.

[Rarah in reply to funkyfran]

Oh no that's shocking. Where is it?

[funkyfran in reply to Rarah]

Canterbury & Margate

[abeliever in reply to Sunflower62]

What is a Depo injection ? Thanks, am in need of being deflated atm, lol

[Sunflower62 in reply to abeliever]

A Depo injection is a steroid injection to help with swelling in all your joints it can be done by a GP releaf is felt within 72 hours and can last for upto three months you can normally have two in one year.

[abeliever in reply to Sunflower62]

Thanks, thought so but you say it helps all joints, does it then differ from the one like I used to have in my knee before replacement?

[Sunflower62 in reply to abeliever]

At first they were going to give me injections in both knees not sure of the name then as all my joints were bad they decided I would be better off with a Depo to hopefully ease all the joints and not just the knees I guess you could call up and ask

[abeliever in reply to Sunflower62]

Ok great thanks, never heard of that. Yes my hands and shoulders are bad atm. God bless.

[Sunflower62 in reply to abeliever]

Worth contacting your GP to ask tomorrow anything is worth a try to get some ease with our pain hey

[allanah]

Eeny meeny miny mo ....

[Jora]

It's a dilemma, isn't it. I had to make a choice ten days ago. In the end, despite the problems with Health at Home, I opted for Embrel, though no sign of it yet. It means injecting weekly, rather than fortnightly, but i favoured the shorter life in case I react badly. I don't know about Toxiciliumab , but Rituximab lasts for months. If it's effective, that would be brilliant, but knowing how sensitive I am to drugs, it would be a long time to wait for it to wane if there were problems. But I am sure you will make the right decision for you. Good luck. Jo

[farm123]

Difficult choice. I have tried both - Rituximab did nothing for me and then there is a six month wait after the 2 infusions before you can do anything else but if it works the cycles can be down to possibly once a year. Tociliumab did make a difference to my joints but took my neutrophils out so that was the end of that. The infusion time for Ritux was approx 9am - 4pm and comprises of 2 cycles a fortnight apart then next whenever it wears off while Toc is 3-4 hours monthly. I was told that Ritux worked better on people who are sero positive. But at the end of the day everybody is different. Farm

[Hidden]

Although you may make the choice, when it comes down to it the team may make another one for you! I was expecting one type of medication and the one delivered was Enbrel when I phoned my medical team they said the decision was that this would be better for me. Good Luck anyway. xx

[beeckey]

Toxicilumab i have been on both that worked best.Good luck

[Rarah]

Thanks everyone. I've gone for tocillumab as there are no listed neuro side effects to it. However it will be two months before I start it as I'm having surgery at the end of July.

[Ozzy]

Been on both, Rituximab did nothing for me and it took ages for the doctor to agree. I am sero negative and I have heard that sometimes it can be less effective. I had my first dose of Toxiciliumab just over a week ago and I already have noticed improvements in my joints and my eyes no longer feel like they have been sandpapered when I wake up.

[Rarah in reply to Ozzy]

Hi ozzy. I'm happy to hear you are feeling some relief. Long may it continue. How was the first dose?

[Ozzy]

Fine, I was at the hospital at 2.30 and gone by 5. The infusion itself took just over 1.5 hours. I had a bit of a headache afterwards but I drank lots of water before and afterwards as someone previously recommended. The Rituximab was all day!! I also read in the nras mag that there are trials being run to see if it can be given by injection, which would save a lot of hassle of going to hospital every 4 weeks.