Anyone been turned down for tocilizumab because they ... - NRAS

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Anyone been turned down for tocilizumab because they cannot take mxt with it?

Ozzy profile image
Ozzy
16 Replies

I had a call today to say that it was hard to get funding for me as I don't take mxt. I was on rituximab before but it did not help at all with swollen joints, so I have been taken off it. I am at present just on celebrex and have been since March.

16 Replies
Tilly13 profile image
Tilly13

Tocillizumab - wonderful, I do not and have not taken methxtrt as it makes me so ill. Toc is expensive, ask if any trials you could sign up to.

Ozzy profile image
Ozzy

Thanks for the info. The hospital has asked me so many times why I am not on mxt I think that I am being not to have any choice about it, they took me off it to begin with as I became so dizzy after the injections that I collapsed and spent the next three days in bed. I had to repeat this three times before they took me off it!

-TNF is generally given with MXT, this is the problem I had as Mxt makes me ill.

Now they want me to inject a reduced cut of MXT to see how I go, so at the moment I am waiting a prescription of Folic Acid to suppress the contra indications.

I am in my 60 s now so the -TNF can cause a serious problems or bang down the immune system

They generally give MXT with -TNF so I am in a bit of a hard place at the moment, I was as sick as a parrot when taking MXT and I have been on all DMARDS

All the best

BOB

Ozzy profile image
Ozzy in reply to

I did find that the injections of mxt did not make me feel as sick as the tablets but unfortunately gave me other problems. I have also been on 6 dmards which either made no difference or had bad side effects. I was on humira for 18 months which was wonderful until i caught a bug and it stopped working so well, das score went up, guidelines said I had to stop taking it.

farm123 profile image
farm123

I am unable to tolerate MXT but have just have 2 infusions of toc a month apart then a further 1 after 8 weeks but unable to continue as neutrophils have been affected and not returning to normal until 7-8 weeks post infusion plus not enough improvement. Hoping now to be put onto Abatacept.

harryhunt profile image
harryhunt

TOC has put me in complete remission after MTX started to become less effective. It works without MTX but they are still obtaining clinical evidence which is why I'm on a trial with TOCILIZUMAB that tapers MTX dose down. Roche pay for everything, even expenses and this trial is still recruiting nationally as far as I know. I'll still get Toc after the trial because max dose of MTX not doing the business.. My DAS score is now<1 CRP<1 ESR2 . Never had figures like that even after steroids

Munchkinella profile image
Munchkinella

Years ago, in the UK, I was on Infliximab along with Leflunomide as I too couldn't tolerate Mxt. Here in Australia you have to be on Mxt to qualify for Infliximab so my Rheumy suggested TOC /Actemra as there was no such restriction on this.

I now take nothing else along with it. My results are exceptional :-) esr 1 with 0.7 crp. Been on it since July, 4wkly. My neutrophils have dropped the last couple of bloods but they are just monitoring me. Hopefully it will work itself out. Best drug I've every had, with little side affects. Best of luck xx

Jeanabelle60 profile image
Jeanabelle60

I can't take MTX and I was in Tocilimab for months, no problem......

Ozzy profile image
Ozzy

Thanks for your replies. I go into battle on Tuesday with the rhummy and your replies have given me confidence to state my case that I have read that you can have Tocilizumab without mxt. If still no joy I will see if I can find a trial for it.

net2012 profile image
net2012

Please read the NICE recommendations asI think it does say you have to fail on mtx before you can go on biologics unless you cannot take mtx for medical reasons, which it does seem the case for you or ask one of the NRAS advisors.

allanah profile image
allanah

I was very ill on mtx , but went on yo have Arava with Humira , so if u can't tolerate mtx I still got the biologicals with another dmard

Tillytop profile image
Tillytop

Hello,

I've been on biologics for about 10 years - currently on my third one (tho haven't had tocilizumab). Like many of the others I just couldn't tolerate mtx so have always had the biologics without mtx alongside. The consultant told me that it can be helpful to take mtx as well because it can help stop the body developing antibodies to the biologic drug, and that, if I had been able to tolerate mtx I may not have become allergic to the first two biologics and had to stop having them. He did say that in his opinion even a weekly dose of mtx as low as 5 mg may be enough to help so maybe a lesser dose of mtx alongside the biologics could work for some people. In my case I couldn't tolerate even that but I have still been lucky enough to be able to have the biologics without it. As someone else suggested higher up the page, it might be worth have a look at the NICE guidelines for tocilizumab to see what they say and whether that will give you any "ammunition" for your discussions with the docs.

Really good luck, and I so hope you are able to get the funding.

Tillyx

Ozzy profile image
Ozzy

Thanks for all you help. I was on infusions in march for a different drug which done nothing at all , no improvement but no side effects either, they did not say that I had to have mxt then, but now I think the funding has changed and seems to be taking longer. In the meantime it has now spread into my knees and hips so I have cut my working hours a lot and I am struggling to carry on working and taking care of my family. I don't think that they seem to care about how your life is affected by all the waiting.

Dogrose profile image
Dogrose

I'm on Infliximab and have been told I have to take MTX even though it makes me feel dreadful even in small doses. I was told funding for the Infliximab would be refused if I didn't take MTX and that I have no choice. I'm supposed to take 5mg but even that makes me feel wretched. I tell them I take 5mg but only take 2.5mg, bad me :D xxx

Ozzy profile image
Ozzy in reply to Dogrose

Crazy world isn't if I go back to the mtx injections like I tried 4 times I inject Thursday evening and then say goodbye world until Sunday night ! So the choice I keep being given is half a life or no drugs.... At the moment if they still keep pushing for me to go back onto mtx I am thinking that I will stick to pain killers so at least I there for my children as they are almost grown ups.. Then worry about tomorrow when it happens.

Dogrose profile image
Dogrose in reply to Ozzy

For me, taking the pills, who is to know whether I take them or not? I could be just saying I am and then flushing them, no one would know, they don't test you to see if you are taking them. I know they are supposed to stop you becoming allergic to the biologics, but not all biologics, even other ones that have the mouse proteins (I think the ones with 'xi' in their names), require you to take MTX. You don't specifically need to take MTX anyway, just any DMARD, my rheumy said if I really can't cope with the MTX I can try sulphasalazine but I'm worried about side effects if I change, I always get the side effects! xx

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