Had my first visit to the biologics clinic and I do not qualify for biologics because I am not on MTX and didn't stay on it for 3 months before I stopped taking it, same with arava and now same with imuran. So my choices are go back on mtx and hope I don't kill someone due to the manic rage I experienced on it or end up with such bad neuropathy that I just won't cope. I have to up the dose of imuran as I haven't been on the required dose to qualify for biologics and stay on it for three months regardless of side effects to qualify. The problem is my liver levels have already risen a lot in the last month and if they go up much more I will have to stop taking it and then start on some other medication and start all over again and then wait another three months. This is just a ridiculously stupid requirement I cannot believe it. To say that I am upset is an absolute utter understatement. I just feel like chucking it all in and walking away at this point because it feel like I will never ever get there with the way my body reacts.
At least another three months: Had my first visit to... - NRAS
At least another three months
Surely you can't be expected to remain on drugs if they are causing damage to your liver? Whatever happened to the doctors Hippocratic Oath - "First do no Harm?" Is there no regulating body who you can appeal to? Clemmie
Sorry I wasn't clear, the other side effects are that I have had a headaches of various intensity now for nearly 6 weeks since I started taking imuran so I have been taking panadol on a regular basis so that I can function. If my liver functions go up to the maximum I will be pulled off them and then I have to start all over again and go on something else for three months to be eligible and so on and so forth. I am not too sure what happens if I fail all of the medications. I wish someone had told me this almost three years ago when this all started. I cannot appeal to anyone it is the government that has set the criteria. They would have started me except for these strict guidelines. There is nothing to say I will meet all the criteria anyway. I am at the point of not bothering it is too much of an emotional roller coaster to deal with at the moment.
These guidelines don't take individuals into account. I hope you can get through this drs ought to be able to help you through all this. Big hugs
no they don't and certainly not people like me. i wish I had never heard of them as it is like kicking someone in the head when they are down. Knowing there is something that could help me but having to fit within their criteria to be eligible.
I think helix and twitchy say it all. A decent rheumy should be able to bend the rules. But it's unreasonable to expect you to take meds to which you're allergic. I would try a second opinion if your current Dr can't help. Big solidarity hugs
I know you're in Australia, so different criteria but isn't there a category like here that says you have to have tried DMARDS for 6 months "or they have failed to work or there is a medical reason for stopping them"? I'm sure the last thing you want to do right now is do more investigation but it may well be worth reading up on what the actual criteria are and challenging the decision? Quite often it's a wrong interpretation of guidance. Or is there an Australian body like our NRAS here that could advise you on whether there's an appeal process?
I feel for you, must be so horribly frustrating!
I went through the guidelines with them today and as I seem to never make the three months which apparently is the magic time that people fail in and as I failed one of them more than 12 months ago it doesn't count so I have to be treated like I am just starting all over again and have to fail them all or stay on the one I am in for a period of three months to qualify, that;s if I do even then once they assess me again.
This is appalling news - I'm really sorry. Of the three DMARDs I've tried to date I have apparently failed them all even though I only took Sulfasalazine for three weeks. This is because I had an allergic reaction to it and therefore would not be allowed on it again even though this was four years ago. If we are allergic to bee stings or peanuts then we wouldn't be expected to try them again in order to meet the criteria for the next rung so I can't believe they would expect you to go through this again with drugs - it seems inhumane? TX
They keep asking if I will try mtx again and I said no not unless you are willing to appear at my court hearing for murdering someone. it is Australia so I have no choice but to jump through the hoops they have set. My next DMARD would be gold injections if I fail imuran and then start the 3 month wait again
Hi Someones Mother
It is hard to comment on the regulations, as it obviously differs slightly in Australia. As Helixhelix suggested, it would be worth seeing if an Australian arthritis society can help. Have you tried arthritisaustralia.com.au/ ?
Certainly in the UK, you wouldn't be expected to stay on a drug regardless of side effects to meet the criteria. I suspect it's the same in Australia, but that what they consider to be a side effect severe enough to stop a medication will not always match with how the patient feels, and they do not always realise that what they might consider a 'mild' side effect, because it's not life threatening can still be severe to experience long-term and can greatly effect your quality of life.
Would it be possible to get a second opinion from another rheumatologist at another hospital? Again, I'm not sure of the process there, but it might be helpful to tell you whether this is a problem across the board because of national guidance or if it is down to your rheumatology team's interpretation.
I hope something changes for you soon and that you are able to get onto a drug that helps your RA without the nasty side effects.
Kind regards
Victoria
(NRAS Helpline)
Hi Victoria, no they won;t make me go back on it they asked if I would and I did say no the side effects were too bad to function and I would have killed someone I had such a psychotic rage episode on it. I have to go through the hospital as it is the only option to access biologics. So not much I can do but be at the mercy of Registrars and have appts with my rheumatologist in between.
On your behalf may I shout to the skies -
"OH, FOR CRYING OUT LOUD!!!!"
Thank you I feel better for that -
try upping your water intake to a reservoir full to see if that will take the edge off your headaches and hopefully flush your liver out a bit... In the meantime what date do you cross the 3 month line I' m sure that there are enough of us out here rooting for you to at least psychologically push you over the line into biologicals qualification!!
Take care
Ali
Thanks ALi, I already drink about 3 litres a day so my back teeth would be floating if I drank anymore! hahah, I had a dodgy liver before I started all this from an adverse reaction to an antibiotic. Yes I am going to live in hope that at the end of May I have made it over the line and then meet all the other criteria they have,
Oh for pity's sake, that is just ridiculous!!! Commonsense & taking everything else into account says that can't be the case surely? I would follow Victoria's advice & see if an Australian arthritis group can help you get past the rules somehow being as you have such problems on the very drugs they want you to take again in order to qualify for biologics. Make yourself poorly & risk liver damage to have the opportunity to try meds that could get your RD under control, just not on.
It is the rules I have to be on or have tried all their DMARDS for at least three months before failing them. No one can do anything not even the Drs as they are set by the government. They would have given them to me if it was up to them
So where do you go from here SOM? They can't expect you to suffer all you have previously, putting your liver under duress etc, especially as it's been damaged in the past by an unrelated drug, not a DMARD I mean. Is there no way that would be taken into consideration, that your liver was previously compromised by antibiotic treatment & therefore your case isn't as simple as the guidelines state? There must be someone to fight your corner, even if it's a case of you getting legal advice, maybe even setting a precedent for the goalposts being moved in extenuating circumstances?
They will see what my next bloods say and if it reaches the maximum safe level then I have to come off them. I will then have to go on gold injections and start all over again. If I fail that there are two more I have to try, so this could go on until the end of the year. I just wish that I had never been offered them then I wouldn't be so emotionally conflicted.
I know what you mean, it's like giving you a flicker of hope then taking it away, just so unfair. I really feel for you because it's not just this there's everything else going on with your h, it's the last thing you need right now. I know you try to keep upbeat but if you feel you need them there are warming hugs coming all the way over to you ((()))
Just a thought but it might work to play the 'primary carer' card re your husband's condition and that may get you through the door into more effective treatment/biological.
Good luck
Ali
I don't think the government cares about that.
I had to try 5 drmads before first biologic. That gave me 18 wonderful months before failing then another drmad which made me very sick , finally 6 years later I am on tocilizumab which I don't have to take mxt with, I also had bad side effects with that, nw in clinical remission 😃 but that damage done in the meantime means constant pain and a lot of joint damage 😭 So I know how you feel, the system is stupid not taking into account people as individuals. My only advice is to keep pushing them and take backup when you go to the hospital for support as it is easy to forget something when being questioned about side effects.
Hi Ozzy I am ion my 5th DMARD now but as I failed the others, one more than 12 months ago and the more recent ones I couldn't take for the magic three months, I have to start from scratch as I also wasn't on the correct dosage for the one I am on to be "considered'. So if I fail this one as I suspect I will due to the liver function side effects, I have to start again on another one and wait another three months and so on until I have been through the list. On the plus side there are only three to go on the list and I will have had every one of them. I write everything down in a book as it happens and the date so I have a reference as to side effects etc. I am trying to get an appt with my rheumy to talk to him about all this as you only get to see registrars at the hospital
What an awful situation to be in, my heart goes out to you. Would it help to involve your political representative, here it would be my MSP, to intervene on your behalf? There must be a sensible answer, and they would be in the best place to find it, or redress the situation. It's shocking.
Thinking of you M x
Thanks hatsheput. At this stage I will just see what happens but if this goes on for another year I will be beyond myself.,
That is definitely worth an appeal - yes, you must had tried MTX, but if there are strong reasons why you couldn't stay on it, then it can be considered "tried and failed". See if you can find a patient advocate to help argue it for you.
Hi Earthwitch I had very bad side effects on mtx the worst one was the absolute psychotic episode where I think I could have actually killed someone. I am not aware of any in Australia, The rules are rigid and because I didn't last the 3 months on MTX before stopping it I have to keep trying things until I fail them all. Not sure what happens if I fail the rest of them under the three month period but if it goes in to the next 12 months then I am over the 12 month period again. So I think they pretty much set people like me up to fail the qualifying conditions. If that happens I will start a media campaign as it is just incredibly unfair.
Any advice on taking Sulfalazine
Another Scary Update :(
Need help please
