I have been battling this disease for nearly 4 years now and have been on almost all the drugs and regimes that are available to me. for one reason or another i have been on and taken off, MTX, Sulfasalazine, Humeria, Enbrel, Tocilimub and am now on Abatacept. i have to say here that i am sero negative and that prohibits me from being able to tolerate certain drugs that are available to others.

i started Abatacept 18 months ago. firstly on infusions for 6 months and then on self injections. after about 9 months into the therapy i woke up one morning and 'felt' something different. i lay in my bed for a few minutes trying to figure out what was 'different'. i got out of bed and started to make my way down the hall when it struck me.......I HAD NO PAIN! I could move, walk, stand, use my hands and arms and i could do it all without wincing in pain.

that continued until about a month ago when i started to feel wee bits of pain in places where i had felt none for almost a year. this eventually led to a full blown flare where i was incapable of almost any kind of movement. i was back on huge amounts of pain relief that i didn't need to use for so long.

my main fear at the time was that the drug had stopped working for me. i have a bad track record...... i did some drowsing on the internet to see what was available to me if indeed the Abatacept had had stopped working. the result was not encouraging to put it mildly.

yesterday i had my quarterly visit with my rheumatologist. she acknowledged that my bloods were not great. she also advised i go back on splints for my wrists as driving has become so painful. she was as upbeat as she could be. she said that i would have to stay on the there was nothing else for me! "you have had all that there is available now"........that quote has been ringing in my head since i heard it yesterday......for now, Abatacept is the end of the line with regards to Bio's.

although the flare has receded i am back to pain my 'remission' i was able to do voluntary work for the whole of last summer. this summer i will have to get someone in to weed the garden for me! it is so unfair. i have a holiday booked too. i haven't had a break since i was first diagnosed 4 years ago. i was looking forward to it so so much. now it looks like i'll have to carry my walking stick with me......lovely, walking along the beautiful sandy beaches.......with a walking stick and a limp.

i am feeling a bit down about it all.......but.......i have been worse and i just have to keep telling myself that and just be greatfull for what i have. i don't do religion so i need to fall back on my own human resources and the help of my rheumy team to see me through. and to the good people on here who listen to my ranting on.......thanks, you've been great. XX

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40 Replies

  • I am so sorry to hear that you have not been given too good a news and that it's made everything bleak for you. Hears hoping that want you are now on will work and in the mean time another will come on the market that will be available to you if required.

  • I think the key word is that you have had all that is available "now". Just remember that research is moving incredibly fast on biologics and understanding of how they operate, and how to decide which biologic will work for which person is getting a whole lot better. You never know, in another couple of years there may be half a dozen more different options. Don't give up on seeing rheumatologists regularly, even if it is only once a year. My mum did, when she thought there was nothing else for her in the DMARD line, and as a result missed the bus with biologics and now she is really too old and too disabled for them to make much difference. If she'd stayed in contact with her rheumatologist, she may have been offered something else when it was still new.

  • oh i agree with you 100% Earthwitch.......i do try to be as positive as possible.......mind you i have my days too when a crane couldn't lift me i be that far down......but it does pass otherwise i wouldn't be here now!

    i have to say too that i have thee most wonderful rheumy team. they have done everything possible to help me. at one point i was unable to comb my hair, lift a coofee mug, dress myself, drive my car, prepare meals or feed myself.....i am so much better now than then so i am greatfull, very greatfull. i will continue to see my doc every three months and i'm sure there will be something coming down the line for me and many others like me. thanks for getting in touch and give my best to your mum. i'm really sorry to hear she is so bad......XX

  • thanks really did take the wind out of my sails......but i'll bounce back. there was a question on here the other day about what we have gained from our experiences with Rheumatoid Disease......i have an inner place i can go to when i'm feeling at my worst. i know that might sound a bit airy fairy. what i mean is i am a stronger woman for having survived what i have been through. there were times when i thought i could not take another day of this torture, but i did and that makes me know how brilliant i can be. that strength sees me through the bad times. if it could just do something now about this rotten limp in time for my holiday!!!! thanks for getting in touch with me

  • Everything crossed for you that it is a flare that will settle down soon and you will be able to walk along that beach.

    I was told a similar thing yesterday, I am also sero negative and cannot tolerate MTX, Sulpha, Lefunamide or Aziothioprine. Failed Enbrel, Humira, Rituximab and Tociliuzimab. Have had six months on Abatacept and although has shown some improvement it is not really at an acceptable level. Going to try adding in hydroxychloroquine to hopefully give it a boost. I had chloroquine 27 years ago when I first had symptoms until I fell pregnant and hoping my body will accept it and not react. Hopefully research will bring new drugs to the market soon.

  • I really hope that perhaps this is just a hiccup and that things will settle down again for you soon and especially so that you can enjoy your holiday. Keep positive. Clemmie

  • Clemmie, thanks for the response. i should have said that i am much better now but still not great. i'll be grand, sure there is nothing else for me, is there. hope your in good form yourself. XX

  • My first reaction was poor you but it doesn't really apply to you because you're obviously a whole bunch stronger than I feel I could ever be in your position, but thinking it & counting my blessings that I don't generally have adverse reactions to drugs. With your positivity & attitude & going to your inner place (I don't find that airy fairy at all, more an indication of your character) you'll cope in your way & I hope with the continual research being done other options will become available soon & you find your wonder drug & have the freedom you had on abatacept.

    I'm not really one for saying "sending gentle hugs", but I am, here they are ( ) ( ) ( ) :)

  • i will embrace any good will no matter how its sent. i had a work man in yesterday and he was talking about how strong women are..... i think they might just be but i also think that when things are really, really bad and inn time you are able to look back at what you have survived you have to clap yourself on the back (if you physically can!!). that does make you stronger aand it happens to women and men. nomoreheels, you are a darlin'. XX

  • Just saying as I feel. Your workman could have a point considering what we have to go through in different stages of our life - period pain, endometriosis & IVF in my case, pregnancy & delivery & later in life the menopause & we still carry on regardless!!

    It's refreshing to hear of positivity in the face of adversity. :)

  • So sorry to hear your worries, so really hope it's just a blip and things will pick up for you. But also really curious as to why you say "I'm seronegative and that prohibits me from being able to tolerate certain drugs"? I'm seronegative too, and no-one's ever said that to me? You've got me a bit worried now as I have in the back of my head that there are loads of drugs to try if current ones stop working.....

    (And there are other drugs available, but I guess you just got tired of typing so didn't put them all down -like Infliximab or rituximab)

  • I am also sero negative, cannot tolerate MTX and on Abatacept and told it was the end of the line for the moment.

    I think not being able to tolerate MTX restricts the number of drugs available more so than being sero negative as there are some drugs approved by NICE that have to be used in conjunction with MTX. I was told that Rituximab often does not work as well for sero negative.

    I believe Abatacept works on cells at a level above the cells some of the other drugs work on so if Abatacept does not work some of the other drugs probably will also not have a good effect. Farm

  • thats very interesting farm. like helix i was assuming that the amount of Bios i can tolerate is limited because i am sero negative......i never though of MTX being a factor. thanks for that.

  • hello helix.....strange that you should say that......on tuesday at my appointment the drug rituxmab was mentioned by was then said that i wouldn't tolerate it so it wasn't an option for i'm assuming that that is because i'm sero negative.....might be worth looking into......i had a boss once who told me "never assume anything"......thankss for your reply.

  • I'm seronegative and can't tolerate methotrexate, but did have Rituximab. Unfortunately I reacted badly (anaphylaxis) not long into the infusion, it was horrible! I'm pretty sure that was to do with my general sensitivities rather than being sero-ve though.

  • this is becoming a bit of a mystery. but for some reason i have been told twice that i am not albe to get it. i have a 'thhing' on my heart lung....told it was nothing to worry about though.i really can't think why they won't give it to me, they just won't....i did find out about two possible drugs. one is called BiP and the other is called Kineset or soomething like was supposed to be available in Irre/UK from April. have a look in the net and see what you ccome up with......thanks for the repyy. X

  • These drugs are very complicated and work deep in our immune systems, so if the doctors judge it not being suitable on health grounds then I'm sure it won't be. I'm not sure about BiP but Kineret isn't available in Scotland because it's not effective enough to be worth the cost.

    I'm in the same position as you, I've come to the end of my options with abatacept and it's not worked at all. I'm more poorly now than ever with increasing symptoms and disability. My appointment at hospital is on Wednesday so I'll see what the plan is then.

  • i agree, if they tell me i can't take it them i'm going to put my trust in the people who know what they're talking about.

    unlike you Abatacept was great for me, until recently anyhow. i'm really sorry you are so unwell. i do believe though that other drugs will become available sooner rather than later. we have to hope don't we? thanks for the raply and all the best.

  • helix, there is a response below from farm123 suggesting that not being able to tolerate MTX might be the factor that restricts the use of rituximub.. are you able to use MTX? i'm not! again worth looking into.

  • helix, someone else on here drew my attention to that statement too. i shoould have said that i am also not able to tolerate MTX. that also meanss that the drugs i can take may not be as effective because i can't taake MTX with them. hope that has cleared up some of your confusion. XX

  • Sorry that another drug has bitten the dust and well done for your strength of spirit despite all.

    However I too am curious about what you mean about the sero-negative status re other drugs you cannot try? You don't mention that you've tried Simponi Injections yet (Golimumab Injection) which I've heard very good things about.

    I am struggling myself to find DMARDs I can tolerate but don't have enough swelling in my hands at present to meet the criteria for anti-tnf drugs. I feel caught between a rock and a hard place and so I can relate to tolerance issues that Farm123 describes too. I do hope you can find a new drug that works well for a long time and that your flare dies down soon and you can walk that beach without a stick. But even with a stick I'm sure you'll enjoy yourself. Twitchy x

  • thanks Twitchy, this has opened a whole new thread hasn't it? Golimumb is not a drug i have been on. it was explained to me that being sero negative limits the drugs that i can tolerate. also, as has been brought up here, i am also unable to use MTX so that would limit the drugs i can take too. in other words.....i'm a mess! you know i got to the age of 60 and i was never allergic to anything in my life!!!!!!

    i was thinking about getting those sticky on things the kids play with and putting them on my dull brown walking stick....what do you think?

  • The sign of a good thread is how many new people come on to discuss various ideas the thread raises I feel so not a new thread just a very interesting one perhaps? I say go for it with the sticky things on your walking stick!

    I don't know enough about the distinctions between sero positive and negative re tolerances etc. It is interesting to learn from you that certain drugs aren't thought appropriate for sero-neg people because of intolerances. I had assumed it was because sero positive people had RA more aggressively for the most part but I know lots of people on this site have pretty aggressive disease with sero negative and a few that do very well with RA drugs who are sero positive so this does make sense to me. I'm really struggling just now with MTX and my own allergies so I completely relate to what you must be going through. This is my second time round on it and I just feel terribly sick 24/7 even on quite a low dose. It works well but at such a high price for me.

    I'm traveling a lot this year and worrying about what kind of state I'll be in and which shoes, sticks and so on to bring. I think I need an Indian elephant with one of those Maharaja seats to sit in. Oh and a crane to lift me up to the seat of course! x

  • oh the thought of being up on a beautiful elephant shunting around India......lovely......unfortunately i have to do with a tacky resort for 7 days! on this occasion though i am greatfull even for that i need a holiday so much.

    when i was 51 i divorced my lunatic husband, sold my house and gave away/sold most of my worldly goods. i bouught a back pack and i headed of to Europe for a year. my son just stood shaking his head in disbelief......i didn't care. i knew that if i didn't do what i had always wanted too do then that i never would.

    at 60 i was diagnosed with Rheumatiod my moments of reflection (i have lots of time on my hand these days) i am so glad that i bucked the trend and went wwith my heart. i got to see all the beautiful placed o had allways dreamt of.

    i have no religion but i always believed that two positiive things that religion have given the world are architecture andd i was churched out after a year but veryy happy that i had done it.

    i'm away off on another tangent...... i do that sometimes. please get back to me and tell me about your travels.....i ennvy you but still live in hope that i might one day again bee able to travel again. all the best. jean

  • Sorry, like the others, to hear of your situation. When I have a flare my rheumy team put me back on steroids. Have your team tried them, or are you already on them? Anne

  • aye, i'v been on all the steroids too......the Abatacept was the best drug i have been on. it, for me, really was a wonder drug. my flare has receded but i'm not back to the level i rheumy team have done everything for they can for me......its just a matter of waiting to see what the scientist come up with. thanks for your reply/

  • I am on abatacept and very worried if it doesn't work what next? My rheumy has advised there is another drug after abatacept- KINERET, have you tried this? there are also lots of trials going on with new treatments so don't give up hope yet. luckily we live in an age where new drugs are becoming more available.

  • Legs, the fact that you even have a name is encouraging.....i'll look it up. i know the nurbs are working day and night for more treatments for us. i have every faith that they will. the Abatacept isn't working as well as it used to but i'm still a lot better than i was before going on Bio's. thanks again for that name Kineret, very interesting indeed.

  • I've more to add but am expecting a visitor. But do read the NRAS magazine for info on the latest meds, and maybe bear in mind that your health authority might have to extend the permissions to include you. I dont think we should ever accept there is no alternative. Bon courage! XX

  • thanks for the responce cathie, i will have a look at that site again to see if there is anything since the last time i looked. when i was first put on Bio's i was reassured that once you were passed for them the payment would always be there no matter how many drugs i might have to try, thanlfully. i'm not going away until august but i am like a child at christmas i'm so excited. hope your keeping well.X

  • Hello, I am sero negative too and about to start abatacept after failing on enbrel. I think that it is not 'tolerance' to some drugs, it is more that they might not be as effective if you are sero negative. That is what my nurse and consultant told me regarding rituximab, which in theory would be the next one for me. Mind you, it still goes back to us all being different so what should not work might, in fact, be a wonder drug for some people. If you get my drift.......? Virge

  • Virge, i understand what your saying but to be honest the 'why' some don't work doesn't concern me.....the fact that they just don't is what weighs on my mind.......i was never very scientific. my rheumy team do explain and draw wee diagrams for me but it just goes over my head. Tocilimab was one of those drugs that just didn't do anything for me at all. in fact it allowed the disease to spread to my feet while on it.

    as for Abatacept, for me it was a really wonderful drug. i really did get my life back to almost normal. it is as you say, we are all different and there are few set rules that apply to us. must be very frustrating for those trying to treat us too. in any case, i do hope you have the same result that i had. please let us know how you get on. all the best, jean.

  • I'm taking Hydroxychoraquine and Leflunomide combined as on their own they don't work! Having said that I'm having a flare up! So maybe not the advice you were hoping for!

    Good luck. Ranting on here helps!!


  • Oh Louise, do i not know it. i live on my own with my two dogs so sometime i could talk the head off a walking stick! i'm after going into a whole thing about holidays on here. sometime i rant and then other times its nice to just 'talk' to someone with similar interests.

  • I read this in a research study on rituximab... And not doing as well on the drug is not the same as it being useless. So perhaps you should also push your rheumy to explain why he/she thinks you wouldn't tolerate it? Obviously it's a serious drug with potentially bad consequences, so not something to take lightly. I just know that sometimes people trot out standard lines without really checking whether there's new evidence or other things to consider.

    "An additional finding was that, after adjustment for baseline differences, patients who were seropositive for rheumatoid factor or anti-cyclic citrullinated peptide antibody did better on rituximab, with a mean DAS28 change of -1.6 compared with -1.2 on a second TNF inhibitor (P=0.011).

    However, the investigators noted that there were too few seronegative patients for adequate power to assess this."

    There's also a new type of drug being developed, with trials underway in London but I can't for the life of me remember the name. Senior moment....

  • is it Kineret? someone else mentioned it earlier.

  • BiP! I remembered....

  • just read the article, sounds promising but it doesn't sound as if it is ready to be prescribed mmmmmm just yet. i'll be keeping an eye on this and will certinally bring it up at my next appointment. thanks for the info.

  • Hi

    I too am keeping an eye on trials for this treatment. Looks really promising, and a more " natural" treatment for us. It has just finished the first year of the 2 year clinical trial period. Not sure what the next step is if it is successful at this stage or how long that takes but definitely got my fingers crossed for this one.

    As others have said, there are new treatments being developed all the time of luck to you xx

  • Sorry to hear about the trouble you have been having. I know of several other biologic drugs that are available on the market. Could you try and pull up this website:

    Hope this helps. Take care.

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