Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Dear All
As I explained on my previous post, I failed on the first round of Rituximab last Friday and had a very bad reaction. Today my Daughter took a message from the Rheumatology Clinic and they have asked me to go and see them on 16th August to "discuss other options". I was booked in again to go on 12th August for a second round so it seems that they are knocking the Rituximab on the head.
Can anyone give any advice what the other options might be? Having failed on two anti-tnf's and now the Rituximab what else is there? I know Jenni may be able to give me some advice as she has been down this road.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Jackie!
Sorry its gone belly up...thought they might say that you couldn't have it didn't I? so so sorry
(((hugs to you)))
Options I was given at your stage/ where I am now.
1) Tocilizumab- T-Cell therapy. IV - different to RTX and anti-tnf. I rang up NRAS and their helpline put me in touch with a lady who had done very well on it.
2) Cimzia- Brand new Anti-Tnf that works in a slightly different way to the older ones. Well tollerated and not painful to inject.
3) Abatacept- another cell nobbler again works in a different way to the others.
4) Old, ancient history DMARDs. Gold, pennaciliamine, azothyaprin.
5) Steroid glugs every 3 mths while you have a think...
6) New trial drugs but this is unlikely as they tend to want relatively "unfailed" patients (Hospital trial dept words not mine) onto new drugs. (Drug companies want the patients who are most likely to give good results)
7) Full Chemotherapy (for someone who is already sick, this is so so risky, and my hosp consultant would rather stick pins in his eyes than put me through that- partly because I would need to be isolated for a time- young children etc..)
8) Try old ones again that I have previously failed- perhaps in bigger dose or bigger combinations.
9) Decide not to treat/ have hot cold treatments and steroids only and do "managed care".
10) I have just been offered Tofacitinib- my dr is trying get the permission for this its coming in from America.
Basically, Jackie- I am allergic to all the biologics. This is RARE but there is something about the way I cant tollerate the nobbled protiens that cause it to be a BIOLOGIC. The new one- no 10 is a TABLET so does not have this protien. the others all are injection or IV with nobbled protiens which is what I have the problem with.
At times I have gone for 9) until I get to the point of wanting to chew my own hands off. Then I feel like a real wimp and will beg for anything the rheumatologist will give me.
I am an NRAS call volunteer and I would happily speak directly to you. Give them a ring and they will do the rest. There are many options to weigh them up- local back up if it goes wrong is always high on my list.
Take great care
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jackie
Pleased to know you have that appointment on the 16th. Jenni has covered all the options very well, so you can have a good think before you go back. As you may have read on recent posts I have just started Cimzia ( failed infliximab, didn t have that much in the way of side effects ) and so the second lot of injections next week, to date have had no side effects and injection is fine, I don t know but this one might be an option.
Look forward to hearing from you.
Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jackie
Glad you have got your appointment. Jenni has managed to update you with all the info needed.
If necessary give her a ring. Good luck
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Jackie
I have a friend (in our Bolton support group) who is on Toxcilizumab, having failed on everything else, and is doing absolutely brilliantly. She has been on it for two years now, and has even gone back to work.
Much love and support
Jeanxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Thank you Jenii and everyone for your replies. The information that Jenni gave is very helpful. I just want to go to the appointment clued up and looking as if I know what I am talking about. I have only been diagnosed two and a half years and I still cannot get my head around all the options.
I did some research last night on the internet and came up with Toclizumab and have printed off some information. My Consultant did say to me that if the Rituximab did not work then he was running a trial on a new drug so I may be able to join this. However, I do not know which drug this is.
I am keeping on the with the Methotrexate which I tolerate well but I am still in substantial pain and cannot take "heavy" pain killers whilst working. It is a viscious circle.
I will keep you posted.
Take care
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jackie Sorry to hear about the Rituximab but there are, as Jenni has said, other pathways open. The NICE guidelines do suggest that when Rituximab fails or is unsuitable the next drug for consideration is Tocilizumab so perhaps this could be the one for you! I know a couple of people on it and they are both doing well. Good luck with your appointment, hope they sort something for you soon, Lyn x
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