Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.

May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself

(Mon-09-03-2015, 22:13 PM)jiml Wrote: Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.

May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself

The trick is simple. Psorinovo is not registered.
But.... the substance DMF is registered as a medication, and because of this substance medication all medicines that contain it are covered by the insurance.
Still the patients organisation is working on the registration of Psorinovo, which is extremely difficult. Therefore there is a working group, called SWOP, that works on the start of scientific research. Have you seen my tweet on that? Recently there was a short item on TV. In my tweet I am pointing at that transmission.
In the transmission you also see dr. Van Loon, he is the man that got me on Psorinovo. As I said in a way earlier post, not so handsome as the rheumatologist in the hospital, but way better than him.

(Mon-09-03-2015, 22:56 PM)Caroline Wrote:

(Mon-09-03-2015, 22:13 PM)jiml Wrote: Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.

May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself

The trick is simple. Psorinovo is not registered.
But.... the substance DMF is registered as a medication, and because of this substance medication all medicines that contain it are covered by the insurance.
Still the patients organisation is working on the registration of Psorinovo, which is extremely difficult. Therefore there is a working group, called SWOP, that works on the start of scientific research. Have you seen my tweet on that?

Is it the one I re tweeted although the video was in dutch   ah he was the guy was he .. Looks like a mad professor
Does your system  allow you to do this and still support you

(Mon-09-03-2015, 22:59 PM)jiml Wrote:

(Mon-09-03-2015, 22:56 PM)Caroline Wrote:

(Mon-09-03-2015, 22:13 PM)jiml Wrote: Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.

May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself

The trick is simple. Psorinovo is not registered.
But.... the substance DMF is registered as a medication, and because of this substance medication all medicines that contain it are covered by the insurance.
Still the patients organisation is working on the registration of Psorinovo, which is extremely difficult. Therefore there is a working group, called SWOP, that works on the start of scientific research. Have you seen my tweet on that?

Is it the one I re tweeted although the video was in dutch  
Does your system  allow you to do this and still support you

Yes... We are much more liberal than the UK and the US.
And it is logical. As in the medical guidelines dimethylfumarate is mentioned as a substance for being used with psoriasis, even recently with priority over others.

The system does not punish us, if we do different as the system prescribes.
I think that is more than logical. It is your own body. It is not the system that has to decide over that.

And oh.... Dr van Loon is such a nice man. Bit soft, he doesn't own a motorcycle, but very knowledgeable.

(Mon-09-03-2015, 23:04 PM)Caroline Wrote:

(Mon-09-03-2015, 22:59 PM)jiml Wrote:

(Mon-09-03-2015, 22:56 PM)Caroline Wrote:

(Mon-09-03-2015, 22:13 PM)jiml Wrote: Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.

May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself

The trick is simple. Psorinovo is not registered.
But.... the substance DMF is registered as a medication, and because of this substance medication all medicines that contain it are covered by the insurance.
Still the patients organisation is working on the registration of Psorinovo, which is extremely difficult. Therefore there is a working group, called SWOP, that works on the start of scientific research. Have you seen my tweet on that?

Is it the one I re tweeted although the video was in dutch  
Does your system  allow you to do this and still support you

Yes... We are much more liberal than the UK and the US.
And it is logical. As in the medical guidelines dimethylfumarate is mentioned as a substance for being used with psoriasis, even  recently with priority over others.

The system does not punish us, if we do different as the system prescribes.
I think that is more than logical. It is your own body. It is not the system that has to decide over that.

I think your system is good but I think it would be a nightmare over here

(Mon-09-03-2015, 23:18 PM)jiml Wrote:

(Mon-09-03-2015, 23:04 PM)Caroline Wrote:

(Mon-09-03-2015, 22:59 PM)jiml Wrote:

(Mon-09-03-2015, 22:56 PM)Caroline Wrote:

(Mon-09-03-2015, 22:13 PM)jiml Wrote: Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.

May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself

The trick is simple. Psorinovo is not registered.
But.... the substance DMF is registered as a medication, and because of this substance medication all medicines that contain it are covered by the insurance.
Still the patients organisation is working on the registration of Psorinovo, which is extremely difficult. Therefore there is a working group, called SWOP, that works on the start of scientific research. Have you seen my tweet on that?

Is it the one I re tweeted although the video was in dutch  
Does your system  allow you to do this and still support you

Yes... We are much more liberal than the UK and the US.
And it is logical. As in the medical guidelines dimethylfumarate is mentioned as a substance for being used with psoriasis, even  recently with priority over others.

The system does not punish us, if we do different as the system prescribes.
I think that is more than logical. It is your own body. It is not the system that has to decide over that.

I think your system is good but I think it would be a nightmare over here

That wouldn't work here either. But mainly because even if you take the FDA out of the picture, the insurance companies would immediately take control and make the rules so we'd be in the same situation as now. For a country that prides itself on freedom, when it comes to medical care, we are at the mercy of insurance companies for the most part. I'm sure there is more that we can do on our own that I am not aware of. Not to paint the wrong picture as most doctors here will listen and you do have some say in treatments but they are also at the mercy of insurance companies and the FDA.

Quote:That wouldn't work here either. But mainly because even if you take the FDA out of the picture, the insurance companies would immediately take control and make the rules so we'd be in the same situation as now. For a country that prides itself on freedom, when it comes to medical care, we are at the mercy of insurance companies for the most part. I'm sure there is more that we can do on our own that I am not aware of. Not to paint the wrong picture as most doctors here will listen and you do have some say in treatments but they are also at the mercy of insurance companies and the FDA.

Then you a quite limited. More or less in kind of a straitjacket.

They try to create such a system over here also, because they think it will be cheaper, which is not so, but there is quite some opposition here in NL against it.

(Mon-09-03-2015, 18:02 PM)mataribot Wrote: Fred, I don't think the people who come to the forums are a representative sample of the population. The people who to the forums are seeking social acceptance and are more than likely going to do what they want to regardless. The difference is more than likely the social contract we sign.

If someone wants to drink while taking medication where the instructions says not to, you should call your doctor and ask, not come here etc. While it's perfectly acceptable to ask your doctor, some people lack the intelligence to do so. I don't mean to be rude, but that's how it is.

Another way of looking at though Matari is that some come here to ask just to get reassurance from another that has experience of using a treatment, it's fine your doctor telling you stuff but getting information from the horses mouth so to speak can be helpful.

(Mon-09-03-2015, 19:34 PM)Kat Wrote: Please tell me I haven't signed a social contract somewhere!  I don't necessarily think of it as social acceptance... I mean I joined this site to learn and had the added benefit of making friends and chatting in off topic subjects.  It is great that people here understand the impact of having psoriasis, so if that is what you mean by social acceptance then yes, I'd agree.

I wasn't sure what Matari meant by that either!

(Mon-09-03-2015, 19:34 PM)Kat Wrote: I know you mentioned the drinking and people asking about that.... I've also noticed times when people ask about dosage and such, or (sort of) promote one treatment and well, discourage another.  I've wondered and this seems the thread to ask if people from different countries find it more acceptable to offer advice (as in a bit more than just saying what worked for them).  For instance, myself (and I am thinking it is the American influence) I would never tell someone to increase or decrease any prescribed treatment.  It actually borders on being illegal here.  I'm not a doctor so therefore I am not qualified to advise someone on medication.  Sure, I can talk about my experiences or my thoughts on it.  If I were to offer such advice, I'd be wise to use a disclaimer that says I'm not a doctor and that one should consult a licensed doctor for information.  So I'm thinking other countries are not as strict on that as they are here in the US?

In the USA you take each other to court everyday over something, here in Europe you need to have a good case so maybe in the USA you are afraid to say anything for fear of ending up in court. Here if I tell someone to swallow a whole bottle of methotrexate with a bottle of Vodka to help them sleep and they do, then that's their fault for listening to an idiot.

Although we do ask and advise each other we do still know what is right and what is wrong, should we have any doubts we would look to professionals. I have advised people on the use of their medication and I see nothing wrong with that, if I felt it was borderline I would say "You should ask your doctor" I have also taken advice from others on my dose etc but if I had any concerns then I would check out their advice, it's up to me if I want to trust what the person is telling me is good information or not and I would also take into account the members character and their knowledge of the treatment.

I see nothing wrong with advising someone to miss a Stelara injection if they feel poorly, or telling them to take it three weeks early because they are going away on holiday and didn't want to take it with them. What they do with my information is up to them and they will judge my information on what they know about me or my posts on the forum, if they are comfortable then they will go ahead if not they will seek further advice.

Plus another advantage of asking on a forum like Psoriasis Club, is you are asking people who are using the treatment and they are unlikely to give you misleading information. Should a member post misleading information another member would soon step in and add their opinion, and an added advantage you could also get three members giving information which can help you in your decision.  

So maybe that is why we don't mind asking others, and we don't mind offering advice it's just something we do.

Just a small add on to that with my treatment ( Fumaderm) we have had occasion when we are asked after the member was told by their doctor to increase the dose we have strongly advised against it as we as a community know that doctor was wrong... We also suggest stepping back on dosage if the side effects are getting bad. And one member asked about increasing and again I advised caution, and as long as the dose is within the manufacturers guidelines and given with a warning to have bloods done first. I think it is probably good advice and I have no qualms giving it.
if anyone disagrees with what is advised they soon jump in and advise against
And as Fred says it is advice freely given, it's up to the member whether to act on it or ignore. Usually it is reassurance that is asked for ....that they aren't going in the wrong direction