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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 64
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Hi everyone, now that I have had to come off Humira and Enbrel due to side effects, they want me to go on Rituxamab. I have seen the post where some of you are not benefitting from it. I would like to hear from anyone who is on it and it is successful. I do worry that if it is 6 months inbetween infusions what happens if you get say a chest infection, normally you just come off the anti tnf but if it last 6 months you cant.
Regards
Val
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Hi Vall! I am surprised you have not had any replies about other peoples`s experiences of Rituximab.
I have been on Cimzia for 15 months together with 25 mg mtx. It has been a rollercoaster situation.
One month my CRP is 4 and 6 weeks later the next bloodtest shows CRP of 78. Last week my CRP was 38
and my ESR 28. My consultant is now suggesting to go on Rituximab, but like you, I am not very keen. I am
managing quite well doing my fortnightly injections together with my weekly mtx injection. Having 6 monthly infusions do not appeal to me
It would be nice to hear from somebody. I have been reading Rose`s blog. I wonder, whether she is now better. She
did not seem to have much relief for quite some time.
Merete
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi both, I did try rtx, but sadly only had limited success with it. I only had the first two infusions and was then taken off it.I had absolutely no problems with it at all, it just did not make enough of an improvement or so my rheumy team thought. When I was in hospital having my first infusion, there was a lady who had very severe ra and she said that it had been very successful for her for quite some time, and although she was not benefiting from it anymore, she had high praise for it. So there is hope. I think in retrospect that perhaps I was taken off it too soon. My rheumy doc, it now seems was keen to gather patients to try out a new drug that had just been passed by nice, but I did not know this at the time. Saying that the one I am on now seems to be benefiting me. Sorry not to be more possitive, but good luck with whatever you decide. I have decided to be much more involved in making decisions about any new meds that I am offered. I think that I have been far too docile in just going along with whatever the rheumy team say, perhaps partly through ignorance and partly just wanting to be better!! Zena x.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
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Hi Val
Sorry I only just spotted your post.
I had my second round of Rituximab last October and up until recently have had the best response out of very many drugs, have had RA for 40 years this year, anniversary just after our eldest son's 40th birthday! My blood results have been quite good 'for me' since Christmas, which was about 8 weeks after the infusions. After Christmas I always have a massive flare, but not this year, which I attribute to our friend RTX.
My first round of RTX was in October 2009 and the reason for the long gap between rounds was due to a sepsis infection which took 9 months to clear. However this infection started from an abscess which occurred while I was on Enbrel, not RTX. I was on Infliximab for 1 year, Enbrel for 6. They both helped for a time, but Rituximab has so far had the best response.
I even managed a trip to see our son in the US in April, something my docs had not thought would ever be possible.
So, at least you have one positive post!
Good luck with whatever you choose,
Take care,
Liz
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Dear Liz,
40 years living with RA.....! That is really tough. I am so pleased to hear, that a drug has been found, that really has made a difference.
You must have seen a lot of developments in drug therapies and attitudes to the disease, since you were first dianosed.
I have had RA for 18 years, was lucky not to get it till I was 54, so my children were grown up and already flying the nest. It must be so hard to have young children and often also have to go out to a job. My first 2 years with RA were the worst, and I took early retirement. I just could not cope. As the years have gone by, I have come to live with the beast, and it has become part of me. I try not to let it rule me.
Merete
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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The people I've met on the Rtx when I've been having treatment- well, if you et hem you wouldn't think twice about having it. It's changed their lives so much for the better A couple have struggled a bit because of infections and slow recovery but you get that on the ra meds anyway, only 1 person I know on the Rtx with serious infection and even then she went back on it afterwards. I was allergic to it, I do struggle with the ra meds though, and they are immuney drugs so they aren't gentle ones.... But so many people have great lives on it. One bloke on here went on the great wall of china just unthinkable before Rtx how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Hi Zena,
Thank you for your response.
Now you are no longer on rtx, what are you on instead? and is it helping you?
I saw the rheumy nurse, where I expressed my worry about going on rtx. As I have been on Cimzia for 15 months, and my bloodtests have been up and down, theywanted to change me. She says, it is very difficult to know, if Cimzia is helping, and that we can only find out by me coming off the medication for a while. which I don`t fancy. If I go onto another drug, I will not be able to go back on the Cimzia, the company does not allow that. All very confusing.
Merete
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Merete, I am in a similar position to you, they are trying to get me to come off humira and try something else.
I had 7 years of trial and error with numerous different drugs before I started humira and I don't want to go back there. Humira is the only drug that has ever helped me, ok I'm not cured but I am never going to be am I?
Because the blood tests show that it is not as efficient as it was at the start they want me to try rituximab but so far I have resisted. (don't trust the rheumy team for a start). I still feel it is helping me, I am nowhere near as bad as I was before I started on humira.
Surely we should have a choice and not be forced into trying new drugs if we are happy as we are?
Love Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Merete, The drug that I am taking now is abatercept,called "orencia". It is a similar type of drug to rtx, wiping out a different set of cells. Unfortunately it is also given by infusion, three in the first month, a fortnight apart and then every month afterwards. I suppose the advantage it has over rtx is that it must leave the body sooner thinking about possible infections that may occur, where as rtx presumably stays longer as infusions are only 6mnthly. But of course it is a bit of a pain having to go every mnth to the hospital which is a 1hr journey each way from me. I must say though that it seems to be working well so far although it is very early days yet, I have only been on it for 2 half mnths. My latest esr was 31 which is the lowest it has been since Sept 2009, when my ra became much more severe. I am generally able to do quite a bit more, particularly walking and standing. I feel better and much less tired, life is better!! It is so hard to make choices of drugs when success is so hit and miss, and when joints are getting progressively worse during this time. In the last 2-3 years of trying out diff drugs with uncontrolled ra my joints have become quite a bit worse but thats how it is! Prob not been much help, but best wishes with your choice, Zena x.
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