I think this was mentioned in a post just recently and it has come back to me this week as a possibility for me.
I have this disease now for nearly 4 years. I am sero negative and can't take MTX. I qualified for Bios and was started on Humira.........long story short......after three Bios that for different reasons weren't for me I was put on Abatacept two years ago in November just passed.
This drug, as all the Bio's I was put on, was a wonder drug for me. I was as far as Iwas concerned in full medically induced remission. I was vertually pain free except for the parts of me that have some form of deformaty. This continued up until early summer of this year when I had a flare and experienced 'lock jaw' due to RD in both side of my jaw although at the time I only had pain and deformaty in the left side.
I got a steroid injection for the flare and and it eventually eased, as they do. However I never really went back to the level of pain relief that I had previous to the flare.
Gradually almost all of my 'old' pain has returned and now unfortunatly I now have 'new pain'.....the disease has started to spread again. This is awful for me as I was sure that this drug was what I delieved to be my future, a pain free future.
On Sunday passed my son and I helf a surprise 90th birthday party for my Father. Attending was a cousin and he daughter, who happens to be a Chemist. We got talking and it turns out she makes up my prescription for Abatacept at the local hospital. When I told her about what was happening to me she asked me if I was told that these drugs tend to only have an effectivness for a few years? I wasn't! I was told what everyone is told, they may or may not work, they can take a long time befor they are effective etc, etc. Never at any time was I told that their effectiveness tends to decrease within a few years.
I have a 1st class Rheumy team who have given me the very best of care and attention. I will be attending an emergency appointment today and I will be asking questions. Abatacept is the last drug available to me......for now, I was told that. If I am at the end of the road with regards to thee most effective medication I can tolerate I really want to know about it.
I would really like to know if anyone else has had this experience with Bio's and if your medicial team made it know that they cease to work after a few years.
J xx
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Jeanabelle60
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Nope! I was on infliximab, one of the first anti-tnfs for nearly ten years. I think how long it lasts depends on the individual and circumstances. I came off infliximab because the doctor mistakenly thought I was in remission and didn't need it any longer. In remission because of the meds! I dont think that there are any rigid rules like the one you refer to. I also found that the anti-tnf depended on factors like levels of stress. I would be inclined to not worry but to take advantage of any period of good health to take exercise, build up your mobility- if that's needed. Good luck!
Thanks for your reply Cathie, please see my reply to Emma for the information I got from my Rheumy nurse today. I am going to Edinburgh on Monday with two friends to see the C'mas market. The holiday was booked and paid for back in the late summer when I wasn't feeling so bad.....my friends will have to link arms to get me around lol....I love Scotland, my Celtic cousins and was looking forward so much to getting away for the first time since I became ill 4 years ago...I do intend to make the best of it though....I don't want to think of what may be coming in the new year. Here's to C'mas anyhow and I hope you have a great one.....I'm going to. XX
We have a lot of information on our website about Abatacept nras.org.uk/abatacept-orencia- which states "Over time up to 50% of patients with RA do not respond adequately to the currently available biologic DMARDs (anti-TNF agents). This area of need is being bridged to a significant degree by the newer biologic DMARDs including abatacept".
There are many other new medications and treatments released for RA all the time but if you have any concerns or questions, please do give the NRAS Helpline a call on 0800 298 7650 (free phone) - weekdays 9.30am to 5.30pm.
Thanks Emma, the article was helpful. I saw my Rheumy nurse this afternoon and she was concerned at how much I have deteriated since she last saw me in the summer. She went on to explain that sometimes some patients develope anit bodies that keep the Bio's from working at their best. She siad it is just unfortunate that I can't tolerate MTX. She confirmed to me again that as of now there isn't another DMARD available for me to try. I will be seeing the Consultant on Jan 14 but I really don't expect him to be able to tell me anything any different. What I forgot to ask is if I can expect to go back to the condition I was in before I started on DMARDS, which was just simply awful, I had no quality of life at all. The Consultant I'm sure will be able to give me some information on that when the time comes. I'm trying to be positive but it isn't easy I have to say. Thank you for your support. J
Jean, I'm so sorry for the situation you're in now. I'm of no help regarding your meds but just wanted you to I'm thinking of you & really hope you enjoy your stay in Edinburgh.
I know you'll keep smiling through it all, that's your style, but don't be too brave if you need help. x
You are a Darlin......just going to take it a day at a time as they say......I really can't let it get me down heels.....I'll know more when I see the Doc....he will give me a better idea of what I can expect in the future.....I'm just very unfortunate aren't i? Thanks very much for the reply. XX
One positive thing that you can keep in mind is that even though right now there are limited biological drugs available, understanding of the disease mechanism of RA is increasing at the rate of knots and there are more biological therapies being developed all the time. Don't feel disheartened that you have run out of options - you probably haven't, and your rheumatologist may well be able to suggest something else in the near future.
Thanks for the positive note Earth Witch, I need it. My Rheumy team are just marvalous. I knew by the look on my Nurse's face yesterday when she saw me that her heart was going out to me. She and I get on well and we chat away about what ever is going on in our lives. She will see me again in Jan when I see the Doc. But no matter I'm determined to go on my wee break to Edinburgh with my friends and enjoy it as much as I can. I told my friends that we have to be able to do our own thing when there. They are both shoppers so I will find a place to sit and watch all the C'mas activity and enjoy it with them. I have learned how to adapt to what this disease can be like so I will find what suits me and I'll be grand. Thanks for the reply. XX
Hi it's been awhile since I've been on here, but your post inspired me to write. There is hope !! I am sero negative RA on my final bio recently had a op when I went back on it, it didn't work as effective was told no where to go from that. Then I saw my consultant who is not talking about infusions. I said I needed time to think about it. Had a major flare up so had steroid injections via ultra sound which are much more affective than my normal steroid injections
Thanks for that Sarah. Did you say that your consultant is or isn't talking about infusions? The ultra sound steroid injections sounds great, I've never heard of them before.
Bronagh, my darling Rheumy nurse, did say thare are lots of Bio's in the pipe line but just not ready for use yet. With being sero negative and unable to take MTX it means that I am limited in choice.
Anyhow, as I was saying to Earth Witch I intend to enjoy my couple of day in Edinburgh, I love the city, I love Scotland......as I said before I see the Scots as my Celtic cousins. There are so many lovely cafe's and pubs in the Old Town and I will find one with a big window and watch the run up to C'mas. I will very definatly be doing the C'mas Market too no matter what my body says!
Thanks so much for your reply. Believe me they all really help......XXX
I live in edinburgh and you're right about how lovely it is. You probably know that the national gallery restaurant is a nice vantage point to observe. And I think the ice rink is on St andrews square this year. It's been snowing hard this morning but we're well prepared. I hope you enjoy yourself. Xc
THE NATIONAL GALLERY AND SNOW AS WELL!!! Oh I am so much looking forward to it all. We are staying in a hotel in the Grassmarket and will be dining overlooking the illuminated Edinburgh Castle.....wonderful. I'm feeling better just thinking about it. My two friends, Joyce and Mary, are good fun and there won't be a dull moment. I'm a natural traveler, my holiday starts with buying a new toilet bag right up to reading and taking home all the literature left in the hotel room......I know air travel isn't what it used to be but I still look forward to the Airport Bus journey and to strapping myself into my seat on the flight....and a nice wee Brandy once we take off just to get things going.....I know I must sound like a child but it has been 4 long, painful years since I was able to travel and I intend to make the best of this. Before becoming ill I was away somewhere 2/3 times a year not including week-ends in gorgeous Donegal.
Look at all that......I've been going on a bit haven't I? Thanks for setting the scene for me. XX
Your reply to Cathie made me smile Jean. Were you typing it excitedly? I'm still smiling typing this thinking of you getting all excited & looking forward to your hols, I would think more so being so long since you're last one. I remember I used to feel like that years ago before we moved abroad & it became a chore, laying out all my clothes in the spare bedroom (& leaving half of them there because they wouldn't fit in the case lol! Just sitting here thinking of you planning .....it's lovely!!! x
Apart from sympathetic vibes I don't have anything to add to all that's been said - know little about Biologics but as one who has failed to tolerate three DMARDs and many other drugs besides and currently off all RD drugs, I do at least understand the sense of panic we feel when pain is on the rise and hope seems to be dwindling in spadefuls. However I found a recent programme on radio 4 (someone recommended on here about ten days ago) about the Vagus Nerve and a new non-drug intervention for people with RA very cheering and research is going on all the time re new drugs for RD. I'm hopeful that there will be new trials and treatment options for you to try. bbc.co.uk/programmes/b04pv6kq
I love Edinburgh too - I go south for visits and it's where my son lives and works with his girlfriend when he's not studying in St Andrew's just now. Keep your spirits up and have a wonderful time there! X
Thanks Twitchy, I'll have a listen later. My Rheumy nurse did say there was other drugs being perfected but just not available to human use just now. I was told this two years ago so that didn't come as a surpise but I was takenaback that they can loose there potiency after showing spactacular results like I had.
How are you now that you are off al meds? I keep thinking that I'm going to go back to the way I was before going on DMARDS.....that was not nice at all. In fact it was hell on earth. I'd really like to know how you manage now.
Sorry, thanks for the Edinburgh good wishes.....XX
Well I have been having a rough time too but my RA isn't like yours or others on here and I suppose that's part of the problem for me really because I'm still viewed as an RA patient first and foremost despite no return of symptoms after five and a half months since last dose of MTX.
But for me it seems to have all gone sideways into my nerves so that most of my troubles are presently neurological rather than to do with diseased joints. I've seen a neurologist a few weeks ago and he took my symptoms pretty seriously and diagnosed a progressive small fibre neuropathy - which gives me intense pain all through the nights now so I have been getting up to soak my hands and feet in cool bath every few hours. My ESR was up again at 55 and so it's thought that this is to do with my faulty immune system probably but they need to do very invasive tests to be able to confirm that it's immune mediated in order for me to get onto more treatment that tackles the cause, not just the symptoms.
But if nothing shows up in these tests, which they say is very likely with SNF, beyond the fact that my nerves are dying off in my feet and hands and now other places too - then it will be classed as idiopathic and they will only be able to offer me steroids and anti-depressants or anti-convulsants - and as with DMARDs I've struggled to tolerate these too. Unless the RA comes back in the form of clearly swollen, stiff joints - and then I will qualify for Biologics but may not be able to take them because of this neuro stuff.
So I'm currently on my third anti-depressant type med, awaiting much more intensive testing early next year (hopefully - no date yet!). So it's all a bit frustrating my end too but I'm mobile, just numb-ish feet and hands and fed up with fatigue from not getting any sleep at all! Txx
Do you call yourself Twitchytoes because of your condition? Isn't it just awful what this disease can do to us? Steroids, anti-depressants, anti-convulsants........my god!
My heart really does go out to you. I feel terrible now for complaining about myself. All we can do is put our faith in the Dr's and trust that they will do their very best for us.
I'm so sorry to hear all this and I appreciate the frustration that all this uncertainty bring on you on top of the pain you go through. Please keep in touch and I wish you all the very best. XXX
Hey don't feel terrible for complaining - I felt awful moaning to you in this way but you asked so I just told you how things are presently for me. At least I haven't got joint pain to deal with as you do. Let's face it neither of us are exactly fortunate as nor are most people here. It's all relative and I cetainly wouldn't want you to feel bad for having an off load as your situation sounds pretty awful to me - Edinburgh aside which I hope will be wonderful for you! Xx
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Ps yes twitchy toes because of Neuro stuff and because I seem to have acquired a mortons neuroma in each of my feet which rarely hurt (numbness has its plusses) but twitch like crazy every night!
Hey don't feel terrible for complaining - I felt awful moaning to you in this way but you asked so I just told you how things are presently for me. At least I haven't got joint pain to deal with as you do. Let's face it neither of us are exactly fortunate as nor are most people here. It's all relative and I cetainly wouldn't want you to feel bad for having an off load as your situation sounds pretty awful to me - Edinburgh aside which I hope will be wonderful for you! Xx
Thanks Twitchy, sometimes when you hear what others are going through it makes you feel so sorry for them and it takes you out of yourself for a while.
I'm really glad I have Edinburgh to look forward to....again it can take you out of yourself a bit too can't it?
Thanks for your reply. XX
Hi Jean
I was once in a position where there were no more drugs for me to try. Rituximab was available through trials but I didn't meet the criteria for any of the trials so I had to take prednisolone for 15 months while I waited for Rituximab to be approved by NICE. That was 7.5 years ago and it's been great. So you never know when new drugs are on the horizon and luckily we have steroids to help us while we are waiting. Maybe you could also get some physio, hydrotherapy and acupuncture on the NHS? Thinking of you. Take care KiKi x
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beginning to feel a bit scared
not taking meds
Rituximab...
ABATACEPT flares
