Health Boards
Fri-08-05-2015, 15:05 PM
My situation is a bit different, since I have the enormous luck to have not had the exterior form of Psoriasis. My skin has always been excellent exclude a few scaling between my hair. But my hair so thick, that you cannot see it.
My problems started when I got PsA, which at first was totally not recognized by anyone, e.g. i have been treated for Lyme disease and so on, but nobody knew, until I visited a Belgian doctor at rheumatology. He was clear immediately. You have PsA he said, which I had not heard from ever before.
It could end up a few ways he said, either it is doable or you end up in a wheelchair. Well that is not so nice to hear, I can tell you that.
I went to another hospital for a second opinion, but unfortunately they agreed with the first doctor. In the mean time I had been forced to stop my running activities, which was my life at that time. I ran long distances in an athletics group.
The started me on MTX, there was nothing else they said (this is not the first time I tell this, for the ones that know me I can refer that this was the handsome doctor that said this).
After a few weeks I went back to the hospital, complaining that this was terrible, I could not handle it, my whole body was protesting against this MTX.
I asked to be in trials for biologicals, but was not allowed to. So I walked away with nothing.
In the mean time I had gotten a tip from someone who said, you should go to dr. van Loon. So I tried. A nice elderly man, not at all handsome, but... he had something for me... DMF. He was quite sure it would help. And indeed it did.
I did go back to the hospital, asking them to prescribe me the DMF, but the handsome doctor did not want to do that as it was not a registered medication. If I ever go there again, i'll take my whip
with me.
My only concern is of course, will it stay working, this DMF. It is known that sometimes it fails. Luckily I also know people that are on it for already very long times.
But sometimes stories about medications that stop working against Psoriasis do scare the hell out of me.
And now here is psoriasisclub, where I feel at home. Just plain nice people, virtual friends. And a place where I felt it could not be bad to share my experiences on this DMF with others who might be helped by it.
My problems started when I got PsA, which at first was totally not recognized by anyone, e.g. i have been treated for Lyme disease and so on, but nobody knew, until I visited a Belgian doctor at rheumatology. He was clear immediately. You have PsA he said, which I had not heard from ever before.
It could end up a few ways he said, either it is doable or you end up in a wheelchair. Well that is not so nice to hear, I can tell you that.
I went to another hospital for a second opinion, but unfortunately they agreed with the first doctor. In the mean time I had been forced to stop my running activities, which was my life at that time. I ran long distances in an athletics group.
The started me on MTX, there was nothing else they said (this is not the first time I tell this, for the ones that know me I can refer that this was the handsome doctor that said this).
After a few weeks I went back to the hospital, complaining that this was terrible, I could not handle it, my whole body was protesting against this MTX.
I asked to be in trials for biologicals, but was not allowed to. So I walked away with nothing.
In the mean time I had gotten a tip from someone who said, you should go to dr. van Loon. So I tried. A nice elderly man, not at all handsome, but... he had something for me... DMF. He was quite sure it would help. And indeed it did.
I did go back to the hospital, asking them to prescribe me the DMF, but the handsome doctor did not want to do that as it was not a registered medication. If I ever go there again, i'll take my whip
with me. My only concern is of course, will it stay working, this DMF. It is known that sometimes it fails. Luckily I also know people that are on it for already very long times.
But sometimes stories about medications that stop working against Psoriasis do scare the hell out of me.
And now here is psoriasisclub, where I feel at home. Just plain nice people, virtual friends. And a place where I felt it could not be bad to share my experiences on this DMF with others who might be helped by it.