Have I run out of Bio's?

[Jeanabelle60]

For the last ten months I have been on this site praising the drug Abatacept. It allowed me to live a near normal life again. i was even able to do volunteery work for a while. My granddaughter laughed hard at me when I told her to look at me actually 'running' (well sort of like running). i was game for anything. this was 'thee' drug for me and i was so, so very happy. i even went out 'dancing'! I did really!

fast forward to about a week ago.....i was getting wee 'niggles' in places where i haven't had 'niggles' for some time. i ignored it but it was there now all the time and was spreading. i had my usual weekly injection on Thursday lst. i hoped it would cure my niggles. the next day, yesterday, i couldn't get out of bed! i'm right back to where i was 10 months ago. pain everywhere from my jaw to my toes.

i have been through all the bio's i know of, Humira, Enbrel. Tocilimab and now Abatacept. i can't take MTX due to liver reactions so there are other bio's that i can't take.

my question is does anyone know of any other bio's? i had a look on the site here and Abatacept is the last one mentioned. my rheumy told me that even Abatacept was so new that it hadn't completed trial in some places.

i thought i was done with all of this.....that i had found the right drug for me that worked 100%.....i don't want to drift into depression at the thought of nothing now available for me now. i am a fighter and work at keeping the depression at bay all throught the trials i've been through with this disease.....but i have a feeling i'm at the end of the road.....please give me some good news.....

[farm123]

Hi,

I feel for you as in a similar situation having also taken the same bios plus Rituximab and cannot tolerate MTX, sulpha, leflunamide or azothioprine. Have been on abatacept since November with a good reaction for first few weeks but since then although in a slightly better place pain/swelling wise compared to last year still not controlling things enough. Being reassessed at the end of May and like you do not know what else is left to try. There is Rituximab infusion which is 2 infusions a fortnight apart and nothing for at least 6 months or longer if effective. This did nothing for me and seemed a long 6 months to wait to try something else. As most appear to be approved for use in conjunction with MTX it does seem to limit the drugs available. S

[Jeanabelle60]

thanks S, i don't want to sound all dome and gloom but i am really worried. my rheumy consultant has been brilliant and was so please with my results when i saw him in march. i think if i hadn't done so well with Abatacept i wouldn't be taking this return to so much pain as bad. i'll know more on monday morning but i think it will be a consultation with my much loved consultant to see if there is anywhwre to go from here. i'm expecting him to just keep giving me another drug as he has done from the beginning. for some reason Rituximab has never been considered for me. i feel like i have let my rheumy down in some way...... i know thats not the fact but i was so well on it for 10 months. everytime i reject another drug they say things like 'going to have to shoot you if you keep this up Jean'. they try to make it light hearted for my sake and they are wonderful......thanks for getting back to me anyhow. XX

[Crazyjo]

Sorry your having such a rough time I am the same after trying tocilizumab so hope this new one simponi which I will be on in a few weeks will work for me. Good luck x

[Jeanabelle60]

is 'simponi' not the same as Abatacept. i just checked my box of injection in the fridge and it says simponi on the box. for me it gave me the best 10 months i've had in nearly four years and ten different theropies.....all the best C and thanks for getting in touch. XX

[Crazyjo]

Simponi is golimumab x

[nomoreheels]

As Crazyjo says golimumab is the generic name for Simponi, abatacept is the generic name for Orencia. Not the same drug. I'd be inclined to question your supplier (chemist, hospital pharmacy etc.). Or, maybe when you had your consultation your meds had been changed? You say you're seeing your Rheumy on Monday, I'd question him & see what he says. Hope your pain eases soon, it's awful when you have a set back after feeling so much better.

[Jeanabelle60 in reply to nomoreheels]

i have to confess i didn't go myself to look at the injections.....i sent my granddaughter. i called into her 'does it say simponi on the box'? she called back aye......i asked her there now and she just shrugged her shoulders.....teenagers..... i could happily strangle her sometimes, if i had the strength and power of my hands! sorry for the mix up. i was really concerned when i got your reply......thanks for making it right again. XX

[nomoreheels in reply to Jeanabelle60]

Oh that's a relief. I was thinking all sorts not to put too fine a point on it! We trust in our healthcare professionals but they're human & mistakes can happen as our family know to our cost.

[Jeanabelle60 in reply to nomoreheels]

they can of course. it happened to me once when i was attending the hospital for infusions. i was coming off Tocilimab and on to Abatacept.....two nurses were double checking the drug sent up by the pharmacy. one of the nurses new i had been on Tocilimab and was going to give it to me but the checked again only to find out that i had beeen moved onto Abatacept.....the fault was with the pharrmacy for sending the wrong drug but if they hadn't double checked i would have been given a drug that made me really ill. my rheumy team are excellent and i have no complaints about them at all. i'm sorry you are unable to saay the same. mistakes can be made with terrible results. tthanks for the reply.

[nomoreheels in reply to Jeanabelle60]

Our local hospital doesn't have the best of reputations, in holds the dubious honour of being listed as one of the worst performing in the UK, deservedly so in some departments. My husbands aunt was od'd on morphine after a successful op & subsequently died. A year has passed & still no conclusion. Conversely it has the best heart unit in the North West so as long as we all have heart conditions no probs!! Saying that I wouldn't wish that on anyone.

[cathie]

I really feel for you too, I've been off infliximab for more than a year and off methotrexate since the new year. Just getting by on pred and waiting for byetta just now.

I read in one of the articles referenced in the NRAS magazine that a lot of people skip mtx when they're on anti-tnf. This might be worth pursuing. Mtx does make them work better, but without it might be better than nothing at all.

I think this is going to be a growing problem and I think that there needs to be some adjustment in expectations from the medics. I know that my last year on infliximab I wasn't able to do things I wanted to, but I was infinitely better than I am now on nothing.

Hope you get somewhere on your next appointment.

[Jeanabelle60 in reply to cathie]

what is byetta?

[cathie]

Sorry brain fog. I meant Enbrel

[Jeanabelle60]

i thought it was a new drug that i hadn't heard the name of before......'brain fog'.....me too.X

[Sailaway]

I don't know if there are any other bios you could try, but could you possibly be having a flare which might pass? I'm on abatacept, not long enough for it to work yet, and it seemed that it caused the disease to worsen - from the 2nd injection everything got very much worse (and still is 4 weeks later). However, my GP is convinced it's a coincidental flare and nothing whatever to do with the drug. He's sending me back to the clinic for a check, but isn't expecting the drug to be stopped.

Just a thought.

[Jeanabelle60 in reply to Sailaway]

thanks for your reply. i was wondering myself if it might be a flare up, i hope. do you get flare ups on bio's? i've only ever had two in the past 4 years. that was when i was on nothing at all except loads of pain relief.....i was waiting for funding which took 9 months. got a steroid each time. i have to fone the rheumy ward in the morning so i'm hoping to know more then. i am still in pain but nothing like i had there on friday. i am taking more pain relief now that i had to take for the last 10 months.....hope it is just a flar.....thanks again, hope you are feeling well and taking advantage of this beautiful weather. XX

[Sailaway in reply to Jeanabelle60]

I see you've asked a question about flares on biologics - really pleased you did as I'd love to know what other people experience. I hope for your sake it is that and you'll be back to dancing very soon!

[Jeanabelle60 in reply to Sailaway]

Sailaway, i just talked with my rheumy nurse and she said what i'm going through 'could' be a flare up.....she told me that although these drug can work very well, as they have in my case, but they will never stop things like this happening. she told me to top up on anti-inflamatories and if i am still in pain in another week or two to get back to her. my question is when does a flare up become a drug failure? i suppose like everything to do with this disease its a case of wait and see what happens......thanks for your reply.

[Sailaway in reply to Jeanabelle60]

Thanks for letting me know, that's really interesting. I don't think I've heard anyone talk about this before - I'd assumed these drugs worked or they didn't. You live and learn! The timing on this was good, my GP had just told me this when you put the question up, this forum is worth its weight in gold!

[Jeanabelle60 in reply to Sailaway]

it is indeed. yesterday i also attended my first of six appointments with the hydrotherapy in my local hospital. it was a bit on the painful side trying to get into a swimsuit but the pain was worth it. it was wonderful, really wonderful. i was weightless in a bath warm pool and got instant relief from my painful 'flare up'. if you get the chance or hear of anyone else getting the chance of this therapy tell them to take advantage of it......can't praise it enough.

[MarshaM]

Here is an article that mentions the biologics for RA and drugs used in the US

The first of these medications were FDA-approved over 10 years ago? Enbrel and Remicade were approved for use in RA in 1998 and 1999, respectively. Kineret and Humira were approved in 2001 and 2002, while Orencia and Rituxan were approved in 2005 and 2006. Simponi and Cimzia were approved in 2009. Actemra was approved in January 2010. - See more at: healthcentral.com/rheumatoi...

healthcentral.com/rheumatoi...

[Jeanabelle60 in reply to MarshaM]

thanks, i read the article. one thing that it did answer for me was problems with the eyes. i have problems with my eyes from the very beginning but could never get any definite response when i asked about it. my optician was the first to tell me i had rheumatoid in my eyes.

from this article it seems that 2010 was the last time a drug was made available. doesn't sound very positive for me if this drug is failing me. i'll be asking my consultant when i see him in the next two weeks.

thanks for taking the time to look up this information for me, it was very good of you. hope your well. X

[oldtimer]

Don't get too downhearted. There are new drugs coming along all the time. My sister is on a new one as part of a trial in Switzerland (she actually lives in France over the border but was referred to Geneva for the trial). It is not yet available in France or here, but looks very promising.

[nomoreheels in reply to oldtimer]

Fortunately not in need of biologics but for those of you who do it's promising, as long as the NHS approve it (thinking price particularly). Hope it works for your sister.

Geneva, love that place. Had the opportunity of a stopover when we travelled over to Milan to collect a car we'd bought & really would like to go again & spend some more time there to really explore. I remember sitting outside at a cafe & the owner was chatting to the owner of the shop next door. She was speaking French & he was answering in Italian!!

[guineapig in reply to oldtimer]

Hi i am new to this site hope your having a good day. Did i read you had polymyalgia/ rheumatiod arthritis. I have had fibromyalgia 10 years have had polymyalgia for 3 and have been on constant steriods from rheumatologist. I have now been started on Azathioprine to try to reduce steriods as he thinks its turning on RA as hands wrists feet and ankles are causing lots on pain stiffness swelling, how were you diagnosed with polymyalgia RA if you dont mind me asking

[Jeanabelle60 in reply to guineapig]

hello and welcome to the site. i don't have polymyalgia but i do have rheumatiod disease. i was diagnosed 4 years ago. i have been on all the usual meds but couldn't tolerate methatraxate so i have been on on biologicials now for nearly two and a half years. hope you are well at the minute. keep in touch as i'm sure you will find it very helpful. XX

[oldtimer]

I had a diagnosis of sero-negative RA in my late 30's. After courses of treatment with gold injections, then mainly hydrochloroquine and steroids (fashionable then) and then a horrible course of methotrexate, I was pronounced "burnt out" and came off all medication for ten years.

Then after a severe respiratory infection I developed polymyalgia, just as I was getting this diagnosis sorted out, my hands and wrists flared up with absolutely typical RA. After high dose steroids and a further horrible experience with methotrexate (it really doesn't suit me) I tried hydroxychloroquine again but had an allergic reaction (which I had previously to gold and sulphasalazine). Leflonomide no good - raised BP. so now I'm on azothiaprine 75mg twice daily, and still on steroids but only 5mg now.

The azothiaprine has been a relative success, inflammatory markers now normal, with no major flares but I still have painful hands and wrists and occasionally other joints. Unfortunately I have developed secondary OA, so problems with that.

[guineapig in reply to oldtimer]

Hi i have just started azathiaprine and am really tired and a bit dizzy does anyone esle get these side effects

[Jeanabelle60 in reply to guineapig]

Is this a new bio? i've never heard f it befre.

[guineapig in reply to Jeanabelle60]

hi Jeanabelle60 its a DMART like methotrexate, I refused methotexate which was consultants 1st choice and he put me on this for polymyalgia rheumatica which is affecting hands feet ankles wrists

[Jeanabelle60]

thanks, fr that.....i'm looking for any new bio's that are being made available. all the best, jean.