Health Boards
Sat-16-02-2013, 23:19 PM
hi Benlitz,
Fred already mentioned my name a few times. I am the one that usually disagrees with Fred, and he nows that
.
I can only tell what my sequence was through the psoriasis-field, and what I think is logical. Basically I already have written it spread over several posts on this forum.
What I found out in the mean time is that PA (we in Holland call it Arhtritis Psoriatica), is an immune disease, so a dermatologist will not have a good view, as most of them have the, quite evident, focus on your skin. (I might later come back to this statement).
I had already a mild form of psoriasis for some years, mainly on my scalp. Then at a certain point in time, I, just like you, got pain in my joints and feet, they got all thick and painful. As I did not have a clue what it was, I went to the doctor and she pointed me through to the hospital department, where I went to an expert on feet and hands. He examined me, took pictures of me (of my feet and hands of course) saw some vague things and thought that bit of an operation chopping some stuff of my bones, would do the trick. Well, this did not sound very well, and combined with the type of guy it was, kind of a butcher, I said goodbye to him and went off.
Next station was another, larger hospital, with a reumatologist. Internal diseases, this time it was a nice young Belgian doctor. He also took pictures of me (no, Fred, again from my feet and hands), X-ray, I always wonder why these things have to happen two times, examined my feet and hands carefully. Loads of questions, also about my family. And he said to me, I know what you have. It's not reuma, but Arthritis Psoriatica.
O?!?!?, I said, and what does that mean? Can it be cured?
Well, he said, It's not curable, it can mean two things, either it will be livable or you will end up in a wheelchair. Point.
You can imagine that was an emotional and devastating moment. I was quite off the hook at that moment. But let me not bore you with that.
As my finger was extremely painful at that moment he gave me an injection in the finger with Prednisone, which after a few days released me of the pain, and made the finger a bit normal again. But the other problems remained, sore feet, sore hands, could not walk for a mile.
So a better treatment, more overall, had to be started. This was MTX, methotrexate, as Fred mentioned already. It is the normal "first" treatment for PA, when this does not work anymore they will later on go to biologicals..
This does not mean, that it is the right treatment of course. It is only in the protocol which doctors will follow like slaves.
So I got MTX.... In another post I explained already what it did to me, good luck finding this post, and after a few months I quit with MTX, it's the worst treatment in my opinion.
By luckily coincidence a friend of my mother pointed me at a doctor for internal diseases in Utrecht. I went to him, told him my story, he did not have to take pictures (...!.), and asked him if he knew a solution. And yes, he did he said, so he gave me a treatment with dimethylfumarates in a specific form.
And that was the solution for me. It's that easy. Amazingly I am the only one on this forum that uses this form, there is someone else that uses the pure form. All the others are on other medications.
Currently I can do sports again, unfortunately no running is possible, but spinning is now my favorite. And I can live a normal life. It is not completely over, but I have minor trouble, and the psoriasis on my scalp is also long gone now.
Fred already mentioned my posts on dimethylfumarates. You can read through them.
Currently my medication is prescribed by ... a dermatologist.
, but... That is because the insurance will not pay if the medication is prescribed by a rheumatologist. This is caused by the fact that insurances are old fashioned and extremely 'behind' organisations, they still think that PsA is a skin disease, how off-the-road can one be.
Most of the dermatologists "know" that dimethylfumarates work against psorisasis but they will only prescribe it, if nothing else works. Why?.... It is also because they are probably stuck in old-fashioned education and very slow moving international research. DMF is not interesting because it is not patentable. You cannot earn very much with it.
I am lucky however with my dermatologist because.......... He has psoriasis himself.
Always prepared to give more information.
Caroline
Fred already mentioned my name a few times. I am the one that usually disagrees with Fred, and he nows that
.I can only tell what my sequence was through the psoriasis-field, and what I think is logical. Basically I already have written it spread over several posts on this forum.
What I found out in the mean time is that PA (we in Holland call it Arhtritis Psoriatica), is an immune disease, so a dermatologist will not have a good view, as most of them have the, quite evident, focus on your skin. (I might later come back to this statement).
I had already a mild form of psoriasis for some years, mainly on my scalp. Then at a certain point in time, I, just like you, got pain in my joints and feet, they got all thick and painful. As I did not have a clue what it was, I went to the doctor and she pointed me through to the hospital department, where I went to an expert on feet and hands. He examined me, took pictures of me (of my feet and hands of course) saw some vague things and thought that bit of an operation chopping some stuff of my bones, would do the trick. Well, this did not sound very well, and combined with the type of guy it was, kind of a butcher, I said goodbye to him and went off.
Next station was another, larger hospital, with a reumatologist. Internal diseases, this time it was a nice young Belgian doctor. He also took pictures of me (no, Fred, again from my feet and hands), X-ray, I always wonder why these things have to happen two times, examined my feet and hands carefully. Loads of questions, also about my family. And he said to me, I know what you have. It's not reuma, but Arthritis Psoriatica.
O?!?!?, I said, and what does that mean? Can it be cured?
Well, he said, It's not curable, it can mean two things, either it will be livable or you will end up in a wheelchair. Point.
You can imagine that was an emotional and devastating moment. I was quite off the hook at that moment. But let me not bore you with that.
As my finger was extremely painful at that moment he gave me an injection in the finger with Prednisone, which after a few days released me of the pain, and made the finger a bit normal again. But the other problems remained, sore feet, sore hands, could not walk for a mile.
So a better treatment, more overall, had to be started. This was MTX, methotrexate, as Fred mentioned already. It is the normal "first" treatment for PA, when this does not work anymore they will later on go to biologicals..
This does not mean, that it is the right treatment of course. It is only in the protocol which doctors will follow like slaves.
So I got MTX.... In another post I explained already what it did to me, good luck finding this post, and after a few months I quit with MTX, it's the worst treatment in my opinion.
By luckily coincidence a friend of my mother pointed me at a doctor for internal diseases in Utrecht. I went to him, told him my story, he did not have to take pictures (...!.), and asked him if he knew a solution. And yes, he did he said, so he gave me a treatment with dimethylfumarates in a specific form.
And that was the solution for me. It's that easy. Amazingly I am the only one on this forum that uses this form, there is someone else that uses the pure form. All the others are on other medications.
Currently I can do sports again, unfortunately no running is possible, but spinning is now my favorite. And I can live a normal life. It is not completely over, but I have minor trouble, and the psoriasis on my scalp is also long gone now.
Fred already mentioned my posts on dimethylfumarates. You can read through them.
Currently my medication is prescribed by ... a dermatologist.
, but... That is because the insurance will not pay if the medication is prescribed by a rheumatologist. This is caused by the fact that insurances are old fashioned and extremely 'behind' organisations, they still think that PsA is a skin disease, how off-the-road can one be.Most of the dermatologists "know" that dimethylfumarates work against psorisasis but they will only prescribe it, if nothing else works. Why?.... It is also because they are probably stuck in old-fashioned education and very slow moving international research. DMF is not interesting because it is not patentable. You cannot earn very much with it.
I am lucky however with my dermatologist because.......... He has psoriasis himself.
Always prepared to give more information.
Caroline