I have a feeling they won't offer me Gold injections so Azathioprine is the only DMARD I've not tried yet. Everything else, bar the weekly 10mg MTX, has not suited me so I'm reluctant to try another one when I've had no luck with any of the others...has anyone tried Azathioprine? I've not heard much about it before searching for alternatives!
I have a glimmer of hope that my Consultant might suggest trying Biological's but as I'm only 6 years into treatment and I don't want to go through too many more options too soon...I'm just very fed up of being fed up. Should I ask about trying Biological's? I'm seeing my consultant on Thursday so any help you can offer before then will be very welcome, thank you.
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emandedmum
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I'm just over 2 years into treatment & Biologics have been raised as the next option. Plenty of people seem to be offered Biologics relatively early on.
I don't know if you are aware of the NICE criteria that patients have to meet to qualify for Biologics but here is a link to an article on the NRAS site that outlines them:
I know what you mean about being fed up of being fed up .... you get so you just long for something to shift, some positive change. 6 years sounds like a long time. Looks like you are Mum to a young family so you want & need significant improvement right now surely? I'd say make sure you are informed as you can be & as sure of your own mind as you can be and then push like mad for what you want with great confidence.
Thanks Woolly, just been reading through this very info, it's always best to be informed. I will definitely ask, especially as it's seems I'd fit the criteria, the MTX is doing an ok job but I've recently reduced from 20mg to 10mg and have noticed a huge drop in it's effectiveness having flare ups in new and unusual places. A little more energy to keep up with my children would be lovely too!
I think Summer may be on or have tried Azathioprine, but she might be off sunning herself on holiday at the moment. But I do think 6 years trial and error is enough, so you should be asking point blank about biologicals. Maybe there's some good reason why they think trying every DMARD that exists might be better for you, but if so you need to be told. I do understand the feeling that you need to keep some drugs in reserve and that's why I haven't pressed hugely for biologicals, and the fact that eventually the DMARDS kicked in so doing quite well now. But you do need a good quality of life now, especially with your kids....and you're young enough so that maybe they'll have developed new ones for you in years to come. There are three main types of biologics, that target either anti-TNF, IL6 or B cell. so that's three broad classes with a couple of choices in each so should be enough to keep you going for quite a few years while they develop new ones if you have an RA that seems to enjoy sneaking round the drugs eventually. Pollyx
Thank you, I do seem very sensitive to all the other dmard's and am reluctant to 'battle through' or 'put up' with side effects because I do have little people who need me to be well! I last saw a locum who was very abrupt with me and not very helpful, I'm hoping it's my 'proper' consultant this time who is more sympathetic to my individual needs and I will ask as it seems hopeful that I might get to try them after all these failed attempts! Any of the options make for scary reading though, I will just not look at the side effects...
SUMMERS back from sunning herself and was on gold injections succesfully for 18MONTHS until unfortunately for me they stopped working!, Havent tried azothioprine, heard mixed reports currently only on steroids and painkillers waiting on consultant!!
Only six years into treatment????? If you have hung out this long and still aren't getting good results with DMARDs then its definitely time to ask your rheumatologists some straight questions about why you haven't been offered them yet, or when he is planning on doing so. When you think how short the NHS targets are for first appointment, then starting treatment, they clearly want to get RA under control quickly, and six years is a long time in the grand scheme of things.
Don't worry too much about the side effects of biologics - if you really think about it, just about anything you put in your mouth can have bad effects. As far as the biologics go, they do have some very rare, very serious effects, but the more they research them (as they have been used for longer now) they more they are realising that actually they have a pretty good safety profile compared to things like long term use of NSAIDs or steroids. Personally I'm far more scared of long term steroid effects than I would be of biologics.
I was started on Humira less than two years from diagnosis, came off it pretty fast too, it is scary running through so many drugs so fast but I don't think about the future too much! xxx
I agree wholeheartedly with the others in that you have clearly been struggling on for a long time and I am very sad for you that the docs have not moved more quickly in considering your eligibility for one of the biologic drugs. I hope, very much, that when you see your consultant on Thursday you feel able to ask the question.
I understand your feelings about not wanting to go through the drugs too soon but my thoughts are that, with RA, we have to grab every opportunity to be as well as we can NOW, so as to give us the best quality of life possible and limit the damage the disease can do to our joints and other body systems.
Like you, I pretty much ran out of DMARD options, then when the first biologics became available on the NHS I started working my way through those, worrying about what I would do if I ran out of options again. But now it seems that there are new biologics coming on line all the time so I think you have quite a way to go before you would find yourself out of options again. I know that for some, like me, these drugs can be real "miracle workers" for others they don't work, or don't work well enough but like with all these things you don't know unless you are given the opporunity to try.
I know the side effects make scary reading (as they do for the DMARDS) but these days I take the approach that I would rather have the opportunity to be as well as I can be NOW, than miss out on that opportunity "just in case"
So I would say "go for it" and if necessary "push for it" and hopefully, if you are able to try one of these meds, then I hope you find it helps you as much as it has done me.
It sounds to me that you should try biologics. I tried them but they didn't work for me so back on leflunomide & Methatrexate, but I don't regret trying them. They are bringing out new drugs all the time so don't worry about eventually running out of options. X
I have just come off Azathioprine as it gave me bad stomach ache and than projectile vomiting so that I could not keep anything down even water. I have tried 5 other drmads which I either had bad side effects or they did nothing. I was diagnosed in 2008 and started Humira in 2010 which worked very well for 18 months before I had to come off it, would go straight back onto it if given the chance. Now on Rixtumb which is not doing anything at the moment. I try not to think about how many different drugs I have tried as my rhumy nurse said that there are always new ones coming out, and the most important thing is to stop ra from causing further damage.
I am now on tocilizumab and have been for five years. I am so much better with only occasionally having bad days after over doing it. I still have pain but that is due to the damage done to my joints before the toc.
Hi Ozzy, thanks for your prompt reply and pleased doing well on Tocilizumab - shall look it up ; am due Rituximab infusion mid October , so wishing to find out everything about it ; composition and side effects and tips from forum members
Drink plenty of water beforehand and keep drinking during as I found it helps to avoid getting a headache after infusion. I had Rituximad and then Tocilizumab by infusion. I try not to worry to much about side effects as I know how much damage uncontrolled RA has done to my joints.
I went on the bus because it’s easier but I felt fine afterwards. The nurses keep a close eye on you, checking your blood pressure, they make sure you are fine before leaving the hospital. They also do extra checks on your first one and control the flow of the drug.
I went onto Humira (anti tnf) after just one year. None of the DMARDS worked and they made me feel so ill. The humira has given me no side effects at all... and my joints are so much better than they were. So I would say find out about them asap!!!
I agree with everyone here. My boys are in their teens and early twenties and I find that hard enough going - if I'd had all this to cope with when they were younger I would have been very much like yourself and had to balance out how the DMARDs made me feel compared to how the disease made me feel. Even now I have got to the end of my tether again with MTX by injection (which is more effective and brings less side effects) and Hydroxy seemed to make no difference to me so I'm off that and coming back down to 15mg injectable MTX again. Can't take Sulpha as had a nasty reaction to it and that leaves the others you've mentioned. No one has spoken about anti-tnfs to me yet but I am almost ready to throw in the towel with MTX apart from at a lower dose maybe. It does work for me but the price is far too high. I think 18 months is quite a long time but 6 years is loads and I think you should be entitled to biologics now - especially as you are younger and have young kids. I observe less people complaining of side effects with biologics than with DMARDS. Tilda x
I wouldn't worry about running out of meds options either - they are developing new, much more targetted drugs at a really rapid rate now. Just think how many new and different biological drugs there are on the market right now, and how short a time ago it was when the first one was introduced. Research is pushing ahead really rapidly, and its not just about finding new meds, its about understanding exactly how inflammation is triggered, and then finding meds to deal directly with that.
I am now 3 years into treatment for what the doctors call "I don't actually know what you have but the biologics are working". Official diag is inflammatory poly arthropothy.
I was on and failed to have a favorable result on all the dmards and prednisone. This was less than a year before my Rheumatologist put me in humira, had a wicked bad set of side effects with that one so got off all drugs for almost a year until everything went way down hill. Ended up in hospital after dropping 52# in 7 weeks, could barely move or walk, was dropping 2# a day in hospital and had a heart rate that would not come below 100bpm even while at rest. My immune system was in high gear trying to kill something (like me), then I got the Rheumatologist to try different biologic medicine. I started with Anakinra, it is an interleukin 1 blocker. Did not work after 49 daily injections. Got onto Actemra (Tocilizumab) it is an interleukin 6 blocker. This brought everything under control in very short order. Main problem now is that the cartilage in my knees has dissolved.
Any chance you get to try biologic drugs then take it. The sooner the better in my opinion.
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