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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi all, A quick post,just wondered if anyone knows anything about orencia? It is a new biologic, anyone on it or even trialed it? Would be grateful for any knowledge Thanks Zena x.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Zena Abatacept is a T-cell regulator which has been around for the treatment of RA for quite some time. NICE have recently issued guidelines about when this drug can be considered. Here is the NRAS article on the guidelines for Abatacept. The usual treatment pathway is - DMARD (Methotrexate, Leflunomide etc.) - Anti-TNF (Infliximab, Humira, Enbrel and more recent anti-tnf such as Cimzia) - Rituximab (B-Cell depletion therapy) - Tocilizumab (IL6 antagonist) - Abatacept (T - cell regulator). Sometimes consultants will prefer to choose a pathway that they feel is more suitable for their patient. Here is more info about Abatacept from Arthritis Research UK NRAS also publish a really good informative guide to the Biologic drugs, you can phone to request a copy. I only know of one person who has tried Abatacept and it wasn't a success! Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Thankyou Lynn for the information, doesn't sound like its a drug that has been used loads really, although I read that some folk have been on it for 9yrs. I have looked at arthritis research U.K. and yes there is a lot of information on there, I shall use it more now that I know it exists! I guess I'm not going to be able to find out much about other people's experiences. Pity it wasn't more successful for your friend. Ido not really know why it has been put forward for me, so far I have had minimal success with enbrel and rtx perhaps it is just that it is now available for use after failing with rtx. Just see how it goes......... Thanks Zena x.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi again Zena The current choice following failure of Rituximab seems to be Tocilizumab. Four people at our clinic have followed this pathway and are apparently now doing very well. Abatacept is used very infrequently it seems. I have had two anti-tnfs, Infliximab and Enbrel, both successful but lost efficacy over time. I was advised to try Rituximab but like you have failed on that so waiting until May/June for my next assessment. I know I will be expected to follow the Toc. route but am wondering whether I might be able to try a third anti-tnf. Until then it's Methotrexate, Prednisolone and Naproxen! The NRAS helpline might be able to offer you advice on Abatacept or put you in touch with someone who has taken/is taking the drug. Do keep us posted and good luck  Lyn x
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Rank: Newbie
Groups: Registered
Joined: 12/6/2009
Posts: 8
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Hello Zena
I have had 8 infusions of Abatacept (Orencia) starting June last year. I am not sure whether or not they have done anything useful or not.
In October I developed a manky throat - white patches and spots. My GP and the ward doctors kept telling me it was nothing to worry about and would clear in it's own time. I did have a course of antibiotics (did nothing) and a throat swab which was negative. I saw my consultant again on Monday and he wants me to continue with the Abatacept in case it was just a blip, but to see someone in ENT before anymore infusions to check out my throat.
I also became depressed and started anti-depressants in January. I have had several periods of depression before, but it is mentioned as a side effect of Abatacept. Who knows! It is so difficult to know whether it is the disease being active or an infection or side effects causing the problems.
I was so fed up in January that I rebelled and didn't go for the last two infusions.
I have had gold injections, Prednisolone, Methotrexate, Sulphasalazine, Leflunamide, Cyclosporin, Etanercept, Humira, Anakinra, Rituximab and Colchicine!!! Some worked for a while and then stopped. I currently take Prednisolone 27.5mgs, Sulphasalazine 6 tablets a day, Colchicine plus all the extras that go with them. Prednisolone is the only drug that consistently provides any relief for me, and have been taking them for over 22 years lowest dose I ever managed was 6.5mgs.
The noticable side effects I felt with the Abatacept infusions was an increase in sweats, a bit headachey for a day or two, sore tongue and palpitations. However these could also be caused by getting too tired from the day trip for the infusion combined with the terrors of hospital transport. I live near Gatwick 2 hours away from the hospital (Charing Cross).
The consultant thought the next drug to try would be Tocilizumab but is being cautious as my health authority are getting more and more reluctant to approve the drugs for me.
Wishing you all the best and hope that Abatacept may be the one for you.
Liz t
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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I am so sorry Liz, you do sound as though you have been going through the mill! Thankyou for telling me about your experiences, even though they are not at all possitive. It is so difficult with these problems, that you and all of us experience, to know whether they are side effects of the drug or effects of just being run down and not very well. You have tried so many different things, to try and get relief, that I am not surprised you feel so fed up and depressed. I long to give you a hug and try to help, and I thought I had a long way to go to my hospital, but your journey is twice as long andthough hospital transport is extremely useful, it is not the best with all the waiting around. I was hoping that if this drug works well enough I might be able to drive myself there afterwards, but have to wait and see. Prednisolone is a great drug, its a pity about the side effects but I'm so glad that at least you have that. I really really hope that you will have more success soon and begin to feel better, my very best wishes, Zena x.
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Thanks again Lyn, I have spoken to my rheumy nurse and she said that they have four people who have recently started on abatacept, and have two about to start, so far the only side effects reported are slight headaches after treatment, none have been on it long enough yet to see any improvements. So it sounds as though it is the route my rheumy doc, is trying now, probably as a bit of an experiment... Time will tell! Zena x.
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Rank: Newbie
Groups: Registered
Joined: 12/6/2009
Posts: 8
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Hello Zena
Thanks for your comforting words. I am sorry I sounded such an old misery guts, that probably wasn't too helpful!! We need to live in the hope that the new drug we are going to try is going to be THE one to sort us out. May it be so for you.
good luck, Liz t
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hello all,
Just a quick post to say that I had my first infusion of orencia on Tuesday. I arrived at 10 o'clock and left at 20 past 11, not bad. All went well, no side effects at all. The infusion itself only took about 30 mins, The rest of the time was spent waiting for pharmacy to send up the meds and for the nurse to mix them up. There was another lady there just starting on it too, so there are 5 of us on it now the nurse said. Back again in two weeks for the next one, then two weeks and after that monthly.
I should have had my first mtx inj too on Thursday, but the nurse rang in sick, so next Thursday now. A bit dissappointed, had syked myself up for it, but had a far more exciting day, as soon as I got off the phone my daughter rang to ask if I wanted to go and visit a new store that has just opened! Keep well all, Zena x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Zena,
Good to hear your first infusion went well.
Fingers crossed it works well for you.
Love Doreen 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 Zena Pleased to hear that your first infusion went well, fingers crossed that this will be an effective drug for you. I was offered Abatacept but decided to try Cimzia, another anti-tnf drug. Having recently failed on Rituximab I didn't fancy any more cells being wiped out en masse just yet!! But, that's just me  Keep us posted, it will be interesting to here how you go on with it! Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Zena, Glad to hear the first infusion went well for you - fingers crossed the orencia works for you! Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Zena. Thanks for updating us. I'm so pleased the first one went well for you. Good luck with the Mtx injections too. I hope this combination will work magic for you. Best wishes from Naomi.
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hello all, just to say thanks for all your kind words.
I did my first mtx inj yesterday, abit odd, but O.K. It felt against all natural instincts, I think mainly because I could see the needle. With enbrel I could pretend their was no needle because I couldn't see it! But actually this was much less painful,I hardly felt it in the end.
Zena x.
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi all, I'm sorry if this is becoming more like a blog! but just an update on the new treatment. So far I have only had my first three infusions, next one is due in a fortnight, so 6 weeks since the first one. I do feel less stiff, am able to walk further and stand for longer. It has not really helped with the pain so much though it takes longer to get to that point where I have to sit down, but I am sure that the inflamation is better partic when rising in the morning. Had my blood test result from last week this morning and my ESR rate is 31! the lowest it has beeen since Sept. 2009! I think that having the mtx by inj has made a difference too, so worth a try anyone who is thinking about it. I must add that I am feeling less tired too, still fall asleep everytime I try to sit down to enjoy my book whatever the time!! but do feel as though I have more energy and incentive to do things. Hope it continues this time........ Zena xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Zena Great to hear that things are improving so well for you I would also say I saw quite an improvement when I too changed over from mtx by tablet to injection. It was only because I read it on the forum that I asked by GP to change me over - thank goodness for the forum !! Hope all continues on the right path, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 6/23/2012 Posts: 36
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Hi Lyn,
I have just joined Nras forum, and noticed your question about Orencia (abatacept). I have just been taken off it after 7 months, it did not seem to be helping me ( JCA for 50 years) and also experienced very bad heartburn as a side effect. However this is not to say this is the norm, and unfortunately I do not know anyone personally who has had it long term. There are a couple of people on the nras unlocked forum, who seem to be ok on it, short term. Hope this is of some use.
Jenny.
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