Health Boards
Thu-08-07-2021, 09:58 AM
As I reported in my introduction topic, I would talk to my rheumatologist about starting Mtx. His assistant nurse had called me a few weeks back, about de Mri results, and she had said that they would start with Mtx and if that didn't help they would switch to Humira.
But why start with Mtx if you're not sure what it does for PsA? I also told in my introduction topic, that I had found a video on Youtube in which my rheumatologist himself indicates that it is unknown whether Mtx actually works for PsA.
Given the many negative reports, but also positive reports about Mtx, I myself had a hesitant attitude towards it. Why start with Mtx if you, as a rheumatologist, don't support it yourself? And why not immediately start on the Humira?
So last Tuesday I went for a consultation with my rheumatologist and told him what my reluctance was towards starting Mtx.
Of course he indicated that it is an insurance policy thing and also the guidelines within the Netherlands, so Mtx is the first choice of treatment, blabla bla bla...
To which I indicated: Yes that's a good story, but not enough for me, because I read that several studies indicate that Mtx does not do much for PsA, that they do not know what it does anyway. And besides, there is a video of you on Youtube in which you indicate that you also do not know whether it really works. So how do you substantiate the choice to start with Mtx?
He looked at me in surprise
I said: I told you that I have Autism and that I am not a patient like others, I research everything in advance, down to the semicolon, so substantiate your story
He started laughing really hard and he said “shit, I'm getting caught on my own words here, very good!.
He didn't mind at all that I confronted him about the research end video and was impressed that I had sorted out so much information.
He said, “As a rheumatologist I can bound the rules, my assitent nurse is not allowed to do that. I understand that she stated to start with Mtx. But I can deviate from the rules. Obviously is by Mri and also diagnosed, you have axial PsA, and if you don't want to use Mtx, I immediately will let you start with Humira, which I also think is the best option for you.
So I said: that's what I want, no Mtx, but the Humira.
And today I will start with the Humira. I have to pick up the injections at the pharmacy of the hospital later this day. Than go to the rheumatism nurse for a injection instruction and my first injection of Humira will be immediately made.
I'm glad I got into the discussion with my rheumatologist and he went along with it. I'm realy glad I chose him as my rheumatologist. When I told him that the pain is sometimes unbearable, my quality of life is really F.ckedup
, that I sometimes couldn't stand it anymore, he also indicated that he understood that very well. (sometime it's very nice to be heard).
If the Humira does not help me, the pain in my neck remains unbearable, he has promised to send me to the pain clinic. So at least he won't let me down and won't send me away like all the other rheumatologists in the past nine years who send me away to the psychologist
I am curious, I hope the Humira will work for me, that I will hardly get any side effects and that I will finally be freed from stiffness and pain after more than 9 years, I hope so! The most important thing for me is that my quality of life gets better than it is now, that's what I'm going for!
But why start with Mtx if you're not sure what it does for PsA? I also told in my introduction topic, that I had found a video on Youtube in which my rheumatologist himself indicates that it is unknown whether Mtx actually works for PsA.
Given the many negative reports, but also positive reports about Mtx, I myself had a hesitant attitude towards it. Why start with Mtx if you, as a rheumatologist, don't support it yourself? And why not immediately start on the Humira?
So last Tuesday I went for a consultation with my rheumatologist and told him what my reluctance was towards starting Mtx.
Of course he indicated that it is an insurance policy thing and also the guidelines within the Netherlands, so Mtx is the first choice of treatment, blabla bla bla...
To which I indicated: Yes that's a good story, but not enough for me, because I read that several studies indicate that Mtx does not do much for PsA, that they do not know what it does anyway. And besides, there is a video of you on Youtube in which you indicate that you also do not know whether it really works. So how do you substantiate the choice to start with Mtx?
He looked at me in surprise
I said: I told you that I have Autism and that I am not a patient like others, I research everything in advance, down to the semicolon, so substantiate your story
He started laughing really hard and he said “shit, I'm getting caught on my own words here, very good!.
He didn't mind at all that I confronted him about the research end video and was impressed that I had sorted out so much information.
He said, “As a rheumatologist I can bound the rules, my assitent nurse is not allowed to do that. I understand that she stated to start with Mtx. But I can deviate from the rules. Obviously is by Mri and also diagnosed, you have axial PsA, and if you don't want to use Mtx, I immediately will let you start with Humira, which I also think is the best option for you.
So I said: that's what I want, no Mtx, but the Humira.
And today I will start with the Humira. I have to pick up the injections at the pharmacy of the hospital later this day. Than go to the rheumatism nurse for a injection instruction and my first injection of Humira will be immediately made.
I'm glad I got into the discussion with my rheumatologist and he went along with it. I'm realy glad I chose him as my rheumatologist. When I told him that the pain is sometimes unbearable, my quality of life is really F.ckedup
, that I sometimes couldn't stand it anymore, he also indicated that he understood that very well. (sometime it's very nice to be heard).If the Humira does not help me, the pain in my neck remains unbearable, he has promised to send me to the pain clinic. So at least he won't let me down and won't send me away like all the other rheumatologists in the past nine years who send me away to the psychologist
I am curious, I hope the Humira will work for me, that I will hardly get any side effects and that I will finally be freed from stiffness and pain after more than 9 years, I hope so! The most important thing for me is that my quality of life gets better than it is now, that's what I'm going for!
, today some nauseous... 
