Why some countries play with their own psoriasis treatments

[jiml]

I believe that it is appropriate to ask the opinion of fellow users after all they probably know more about the treatment than the average doctor, over here it's not easy between appointments to contact the dermatologists and with three to six months between appointments I think it is prudent to ask other users rather than wait.
It may be as Caroline suggests a different culture. But I'm not uneasy when people ask for advice. Giving my experience and usually with a caveat that they do get a dermatologists agreement or at least their blood work done.
I find it a great platform to give and receive advice and support and have never thought of it as inappropriate

I also think that a forum such as this is healthy where we can agree or disagree and respect each other's opinions... Mataribot if you are uncomfortable that is your right to voice your opinion, but it does highlight some cultural differences between us

[D Foster]

As Jim said it is wholly appropriate to ask what other fellow users about treatments as it is only an opinion you are asking about and not a diagnosis with view to a treatment which should be left to the medical staff and your own common sense.
WE all know that everyone reacts in a different way to treatments and what works for one may have the opposite effect for someone else which brings me back to the fact that your own common sense is the last thing you should bring into play. The one thing I have learned is that your own common sense counts for more than some of the medical advice which should not be taken as read by a long way and anybody that thinks that whatever the consultant/Doctor says is gospel is asking for trouble without checking and using their common sense !!

[Fred]

You should never come to a forum and ask the question first. That is socially in appropriate behavior here.

I find that a shame that it's socially inappropriate behaviour in the eyes of the USA as I see it as the opposite.

I think coming to a forum such as Psoriasis Club and asking others opinions first can arm a person with all the relevant information they need about a treatment before seeing a professional, that to me is very good social behaviour as it's sharing with my fellow psoriasis patient one to one (or even a hundred to one if enough answer) surely it is better to get information beforehand from those with experience rather than believe exactly what a professional may tell you.

Look at it a bit like buying a new electrical product. Do you go straight to the shop and believe the salesman's patter, or do you do a bit of research on-line and if possible ask questions from people who have purchased and experienced the product first hand?

I suppose it's like Caroline said it's a culture thing, we prefer to live our lives how we always have in our own little part of the world wherever we may be from.

         

[Kat]

If you have a question about medication you first call your physician and or pharmacy. If you are not provided an answer you are free to call the drug manufacturer. You should never come to a forum and ask the question first. That is socially in appropriate behavior here. If you have an answer from your pysician and want to talk to people who have done it, then fine. However, majority of people do not do this.

Yes, that is how we do things here in the US. In a lot of ways.... that is a very good practice. And we do have the lawsuit considerations here (which is only good practice when it makes sense)

I think sometimes people ask questions where they are comfortable and for me, as to what is appropriate is going to vary by person. For instance, I might come to a forum and ask about medication, even if I am not on it so I could be better informed when discussing it with a physician. And if it's prescribed medication, the person shouldn't be able to get on it without a prescription.

What we (as in Americans) might find is that we do have a socially different perspective on some things that differ from others. There are a lot of similarities in the medical world all over, but also a lot of differences.

[mataribot]

Fred, I'll try to explain it better- I think my writing skills need improvement. Let's just pick a topic like methotrexate and alcohol. We all know that it shouldn't be done, but research has shown that small amounts of alcohol and MTX is fine. Any pysician is going to give a warning about MTX and alcohol. Socially inappropriate behavior would be comming to this forum and asking If it is safe, without consulting the pysician first. It's not the medium that's the problem, its the intention of the pantient that is not acceptable.

[Kat]

I, for one, have a better understanding now of what you mean.  I wouldn't necessarily consider it socially inappropriate though.  For me, if a doctor says no drinking while on this med then I'm not drinking. Now for those who still want a drink, especially if the doctor tells them small amounts would be ok, then they may only be trying to find out what others consider an acceptable amount.  But, realistically, I think it's probably more that the doctor says no to drinking and they want to find people who say they drink and have no ill effects.  (Wanting to hear what they want over what they were told) The problem is, much as with medicine, alcohol consumption also effects each person differently.  So "X" person might can have a few drinks and be fine yet it could be very detrimental to "Y" to do the same.  

I think that some people feel it is up to a person to make their own decisions and if they choose to believe a person on the internet over the doctor's advice, then they are making that decision and the consequences (if there are any) belong with the person who asked.  And I agree with that.  I've been on other medial forums (even a dog forum learning about Riley's condition) and you'll see a lot of disclaimers.  

Example:  Question "Is it ok to drink while on "drug"?
Answer:  Doctors advise against it, but I've had a few drinks with no problem.
Disclaimer:  I am not a doctor, any statements from me are personal opinion only.  Please consult a doctor if you have questions about your medical care.


And no, I'm not saying those are needed here!!!  Just that is common to see on medical forums with a lot of US people.  Although the dog forum has moderators from the UK who also use the disclaimer, but probably it's just standard for that forum.

I don't think it's inappropriate to ask questions, sometimes they are simply out of curiosity.  I don't think it's wise to ask questions with the sole purpose of just getting to the answer you want to hear. But who am I to tell people not to take chances if that's what they want to do? And different people are going to have a different opinion on it which is cool too.

[mataribot]

You will be hard pressed to to find a pysician on this side of pond that will say it's ok to drink while on MTX. The reasarch says small amounts is ok. However, many people here have no idea what moderation is.

Your pysician is in charge of your care. He deserves to know what medication on are on, even if it's not legal. Using social media to bypass care may land both of you in trouble.

[Kat]

You will be hard pressed to to find a pysician on this side of pond that will say it's ok to drink while on MTX. The reasarch says small amounts is ok. However, many people here have no idea what moderation is.

Your pysician is in charge of your care. He deserves to know what medication on are on, even if it's not legal. Using social media to bypass care may land both of you in trouble.

Agreed. But that is in the US. It appears that other countries feel it's ok to give that advice. I'm not trying to say one way is right and the other is wrong. It's just viewed differently. It's viewed (as I see it) that it's ok to offer an opinion and the responsibility lies on the one asking for the advice. We more see it as unwise to offer any advice medically as we could very well be held responsible.

[Caroline]

You will be hard pressed to to find a pysician on this side of pond that will say it's ok to drink while on MTX. The reasarch says small amounts is ok. However, many people here have no idea what moderation is.

Your pysician is in charge of your care. He deserves to know what medication on are on, even if it's not legal. Using social media to bypass care may land both of you in trouble.

Hi Mati, you are up early !.. Or can't you sleep?

What you say is true on your side of the pond.

On our side it is still so that always the patient is in charge, totally in alignment with the right to decide on matters that affect yourself. Together with the doctor you discuss and agree on which is the best protocol to follow. But you always have the right to go your own way over here.
It is what happened to me. I discussed the use of MTX, and the doctor and I decided to do it. After two weeks I was back with him, and told him that this was the wrong way. (see Freds Journal for the experiences with MTX) He said he could not do anything else for me. I suggested another direction, but he said he could not do that. So our ways separated. Still he urged me, that if my body ever came to a complete stop, than I was welcome to come back. So the 'system' doesn't let me fall.
My direction was obviously better than the doctors, they are no saints. On your side you have major problems with insurance companies and Lawyers. They want that on our side also, the TTIP treaty is a way to achieve that, but we are fighting that fiercely, no matter how, we will stop it.

[Bill]

Hi Fred,

I have private health insurance, but as there is no way I could be treated with DMF via a specialist in Australia, I self-medicate. It is unfortunate that what should be a front-line treatment for sufferers here is unavailable. Fortunately I have had good results and the money I spend on DMF and associated testing is less than I spent on topical therapies and pain killers. I'd spend far more on alcohol.


Hi Jim,

I agree with you that DMF could save millions in health costs, but who will lobby for it and fund the cost of having it approved as a therapy? Even the most disreputable scam artist would likely have no interest in a $20 per year treatment, and I suspect that the public at large would not believe that such a cheap therapy could rival therapies costing hundreds of times more. BTW, the best way of taking the drug I have found thus far is with a large salad (tomato, corn, beetroot, kidney beans, olives, celery and a bit of oil).


Hi Caroline,

Thanks again for pointing me in the direction of this most useful drug. The 800 mg dose that I am on currently has a powerful anti-inflammatory action and I look forward to a continuing benefit.

Cheers,

Bill