I donât feel like the people looking after me are being completely honest with me.
My care-coordinator has said a few times recently that I am âTreatment Resistantâ. This has never come from my pdoc, the only thing remotely close to saying this without saying it is trying to convince me that Clozapine is an option. Is it â â â â .
I found a definition that says you must have trialled a few APâs (One Typical from memory) and all of them failed. Seems a bit harsh criteria to then put someone on Clozapine when there are several more of these drugs to tryâŚ
I disagreed with doing this, and magically the idea of a combo instead was raised, so there is hope after three or four failed drugs! I think this TRS is not helpful in the way itâs defined in some places and by some professionalsâŚ
I am pretty sure if you have TRS, you will know about it.
I think a lot of docs get frustrated when you arenât magically doing better after trying one or two drugs. I took Clozaril and while at the time there was nothing else on the market I hadnât already been on, it was the beginning of a horrible experience. I was young and I can see how they came to that conclusion at the time. Now that I can look back I can see how there were a lot of ways to avoid being put on something that turned into a 10 year long nightmare. The catch is that in order for a lot of things to work besides cycling off of different drugs is a level of support that most communities cannot support.
A lot of people who see a doctor arenât seeing someone they can trust, and even if they are they get such a short period of time with them that the docâs hands are often tied with regard to Rxâing anything but a different drug. I can see how if I had adjusted the dose on some of the things I had taken and had some better support with working and the challenges I had in getting to and from work (fast food job in a town with very limited public transit) the outcome would have been much different. I know now that I am very sensitive to medication doses and there are drugs that can be effective for me at a dose that is deemed sub-therapeutic - and that at a âtherapeuticâ dose I would be too overcome by side effects to continue. My point is that when you donât fit into a box of how a doc thinks a drug should work and you are presenting with symptoms that they find concerning/they worry that you may harm yourself, etc, their solution is switch meds because itâs often the only thing they can tell you.
Your care-coordinator may have a few things they feel they should do and you are ok. If they check off those few boxes and you arenât they say you are TR rather than thinking of how they can help you in some other way. I have heard of people going on Clozaril after 2 drugs fail which is insane. Clozaril is not an easy drug to be on and I completely agree that if there are other things to try you should push for those. Clozaril is still seen as the gold standard so I think they want to force it on us when they are frustrated. There are people who do great on Clozaril but itâs a huge commitment that I donât think anyone should have to manage if there are easy ways around it.
They do this because statistically there is a better chance you will get better on the clozapine than on another med. And those chances are better in the first 2 years of illness.
But thereâs never only 1 choice. Clozapine fails some people and they go on various drug combos, high dose therapies and ECT, there are always options.
Clozaril also comes with more potential health risks and the blood work is especially restrictive at first. The management of it should be factored in to how effective it can be.
Whoâs to say they donât do that ? The bottom line - itâs effective for quite a few people when other meds donât work.
Still with a username like âno drugsâ your antipathy towards it is understandable.
Not all docs do. Clozaril is harder to get off of than other drugs. Itâs a large commitment to make and I donât think itâs always appropriate to go down that road after 2 failed meds.
I wouldnât consider my username reflective of antipathy towards Clozaril or any drug. Not all meds are prescribed judiciously which can be incredibly counterproductive. I am in no way anti med and my username is more of an homage to reaching a point where reckless prescribing of meds is one reason why I am unable to be medicated.