Why some countries play with their own psoriasis treatments

[Fred]

I'm curious as to why some members play with their own psoriasis treatments, I think most of us at sometime have fell for some of the rip-off's and scams out there and believed all the hype about how this will cure you. But how many of you have played with your own treatments and why?

I've noticed on Psoriasis Club that most members that seem to play with their own treatments are from the USA or the Far East, whereas those in Europe tend to stick with their professional for treatment. What is the reason for this? is it the way the healthcare systems work, out of pocket costs, or trust?

Although I am British I live in France so will let the British residents give their opinions on their system, and I will talk about the French system and why I don't play with my own psoriasis treatments.

First off in France Psoriasis and Psoriatic Arthritis are classified as a long term illness, this means that as long as your GP signs a piece of paper every 5 years to confirm you have either or both and you get treated by a dermatologist you will get 100% of the cost of your treatment. Should you not want to go that way you can still get prescriptions for basic treatments from your GP and pay around 30% of the cost but you may as well get refereed to a dermatologist and get 100% (those on low incomes get 100% off all treatments)  

Now I would imagine those of you in the USA and Far East are now saying how lucky we are, but wait it's not that easy. We pay around 40% of our earnings to the social system this covers us for all sorts of things medical social pensions etc, not sounding so good now is it? (I should point out that that those on low income still pay but they get money back by way of social payments, don't ask This is France and they love paperwork) Most French people also pay a small top up insurance that covers the 30% but that is not relevant in the case of psoriasis if you go the long term illness rout.

So we have an excellent well funded health care system and this means someone like me can have Stelara at no cost, this does mean I am tied into the healthcare system and should I want to go it alone with something like what Bill is doing with his own DMF treatment, or I want Fumaderm which is not available I would have to pay for my own treatment. It would also mean I would now be out of the long term illness certificate and should things go wrong I would probably find it very difficult to get back in to the 100% again.

I'm not tempted to play with my own treatments mainly because I have a huge trust in the French system, and I prefer to use something that has been tried and tested as well as being regulated. I'm also thinking that because there is no option and we have to pay 40% of our earnings this makes us use the system, if we didn't pay 40% and it was optional I would imagine most would opt out and then the French would be like the USA and the Far East and start trying to find their own treatments.

I would like to know what others think about their health care systems and if or why you would be prepared to use your own treatment for psoriasis.

[Kat]

Thanks for starting this thread Fred, interesting conversations on this I will imagine.

Here are my thoughts from an American standpoint.

Insurance - Most pay high amounts for insurance (other than those who are eligible for government assistance) but prescription costs have gone up while coverage for prescriptions seems to have declined.  For psoriasis medications, even with your prescription plan, it is expensive.  My plan pays 80%, but when the prescription gets up into thousands..... it still takes quite a bit of money to maintain staying on expensive meds.

Doctors -  Doctors here have protocols on how they prescribe meds (as I've noticed this is also done elsewhere.)  My dermatologist does the topicals first, oral meds next, then biologics.  So here you most likely will get a topical and UV treatment first, then they'll try orals and the biologics are used as a last resort.  I think this comes down not to what is best, but the insurance companies control too much and they will want you on the least expensive treatment.  We (mistakenly at times) then tend to think of this as doing the least invasive first.... topicals being the safest choice, oral meds being the next safest and biological being the strongest (therefore most risky) treatment.  Notice I said MISTAKENLY!   It's not just for psoriasis, I've had to do physical therapy before prior to surgery.  Yes, the doctors say things like we'll see if therapy works before an invasive surgery (and at times that can certainly be true) but there are times I think doctors know the therapy won't work but send you there first so they can tell the insurance company it didn't work before doing a costly surgery.  Some instances, insurance companies require it before they'll approve a surgery (which is stupid at times as then they are paying for therapy that doesn't work on top of the surgery, usually followed by additional therapy after the surgery.)  Insurance companies here pretty much call the shots and there is protocol in place that doctors must follow to get your insurance approved for what you actually need.  Point being, we keep getting told that we need to try the LESSER treatment first, which starts to change the way of thinking to what is the "less" amount that one can use to treat something, when in actual fact we are not considering that the reason doctors (via insurance companies) take that route not because it is necessarily the best way to go, it has just become the standard way to go.  This isn't necessarily true of all circumstances, I'm am taking liberty at saying this is a regular view of a lot of circumstances.

Lifestyle -  Everything here is all about going back to natural.  Not a bad thing at all, but sometimes overkill.  I'm not sure there is anything that is "good" anymore.  Don't eat too much sugar.... so they have substitutes... wait! don't eat those they're bad for you...  Now we are suppose to use natural sweeteners such as honey.  Oh but wait, do not give honey to small kids and also it has the same amount of fructose and glucose as sugar and more calories than sugar....that is one quick example of a thousand examples.   So, you add the going back to naturals to the misconception that topicals are closer to the low end of meds (as far as being bad for you) and you get people who are willing to try to do what SOUNDS like the "better" way to go with medication.

Myself, I am not willing to mess with my meds.  I'll use over the counter (not all of them even) treatments such as oils, creams etc that do no harm in an effort to feel better.  Same as I will use hot tea (and sometimes a bit of whisky and honey) to soothe a cough.  When it comes to prescriptions, I will try to follow doctors orders unless I feel strongly about NOT using something.  The reason is that I am always hopeful to find a good doctor that will try to do what is best and if it gets to the point I disagree with them, I will find another doctor that I feel comfortable with.  I'm paying them for their knowledge after all and if I'm going out on my own then I'm wasting my money with doctors.  But here we are at the mercy of insurance companies (and doctors are as well to some extent) in what treatments we can get.  The good part is that I CAN find my own doctor.  So there is some good to go with the bad.

But, I digress.  I think Americans (or at least myself) don't so much think we can just try out what we want, but that we have fallen into an idea that we should take charge (which I'm for.... to a point) and so we search and search on our own and when we see something that sounds like it is less harmful to our bodies, we perk up and listen.  We hear it over and over again.  The problem is that when we combine the medical practices (which follow insurance guidelines) we sometimes start thinking that we should always try (for example psoriasis) natural......then topicals........then meds.  If natural works then that's terrific! I admire those that have the diligence and the willpower to moderate their diet to stay healthier and help with medical issues!  I also believe that for some people going that route isn't the answer, they need meds.  And topicals are meds, they are not necessarily the best for ones overall health, but it SOUNDS better so it's easy to fall into thinking you're not putting something into your body (even though you are as it is absorbed)   So, I don't think it's that we want to experiment, only that we are always looking for a way to be healthier and we are often mislead as to what that is.

Editing this to add:
I said that I would not go out on my own for meds, which is true. I will, however, discuss with a doctor the possibility of trying something to see what they think.

I guess what sums up how I feel about doctors is this:

My hand therapist told me I should TELL my doctor something regarding treatment (don't remember what it was) She said, it's your body and you are "captain of the ship". My reply best describes how I feel about doctors. I told her I am not qualified to be captain, hence why I hire the doctors for that job. I am "owner of the ship" but I hire out the captain job.

[Fred]

Thank you Kat, yes I thought it could make a good topic.

The health system here also follows the same protocol, you would never be given the chance of going straight onto a Bio for example. But (maybe I'm lucky) once you are with a dermatologist they do seem to work very hard and will soon move you on if you are having problems.

As for the diet thing I wonder again if this is more of an American thing, I know some people in the UK try fad diets but they rarely last and here in France you rarely see mention of diets. They say the Mediterranean diet is one of the best maybe it's a myth I don't know, but speaking for myself we do tend to eat healthily anyway and would probably class my diet as close to Mediterranean.

I'll let other chip in, but it's making interesting reading.  

[D Foster]

We in UK have our National Health Service which is anything but a National service with each area working more or less independent from each other with their own rules and ideas.
We pay National Insurance tax plus income tax plus VAT plus several other taxes which must account for well over 40% of our income in UK however if you are on benefits such as unemployed then your prescriptions are free. If you are paying then they are over £8 per item but all people over 65 also get free prescriptions .
The service that you get can vary quite a lot with some NHS areas focusing on different strategies which mean that in some parts of the UK cancer treatment is good but elsewhere it can be what is known as in UK, a postcode lottery. This means that it is very hit and miss with an attitude of quite a lot of NHS staff that whatever they do it is right and should it go wrong then they are not to blame with cover-ups the norm. Individually there are good staff but collectively is when it goes wrong.
To be a bit more positive there are a lot of first class treatments in the NHS but from personal experience with both I and my daughter you do have to fight for it.
My P and PsA treatment has, over the years, has also been very hit and miss and in recent years cost has figured more and more into the equation.
I have been very lucky when we moved because in this area all the dermatology is done privately in a BUPA hospital by a private consultant and the funding is easier which gave me the opportunity to go on to Stelara after 9 years plus on MTX. The difference between the NHS and BUPA is significant but I suppose that when you look around different countries we are far better off with our NHS than some of the alternatives
When you get the situation that it is costing £8 plus for each prescription item then you will get people looking at cheaper alternatives in the hope that they will work plus there is always a small minority that believe in what can be described loosely as homeopathy which since the internet is easier to obtain with the added influence of "experts" pontificating how good these are.

[Fred]

Thank you Dave.

Yes the good old post code lottery, I'm surprised it's still going on. I've been here 11 years now and it was bad enough before I left, but I'm finding we are often telling people in the UK that they have to get aggressive and push in some areas.  

A couple of questions cause I've lost touch with it all over there.

#1 You mention your dermatology is with BUPA so am I right that you or your employer has paid for the cover, or does it mean that as there is not an NHS one you have the right to use the BUPA one and it's paid for by the government?

#2 The £8 prescription charge is free for low incomes and pensioners yes? And am I right you can buy a yearly prescription, if so do you know how much it is?

[D Foster]

Thank you Dave.

Yes the good old post code lottery, I'm surprised it's still going on. I've been here 11 years now and it was bad enough before I left, but I'm finding we are often telling people in the UK that they have to get aggressive and push in some areas.  

A couple of questions cause I've lost touch with it all over there.

#1 You mention your dermatology is with BUPA so am I right that you or your employer has paid for the cover, or does it mean that as there is not an NHS one you have the right to use the BUPA one and it's paid for by the government?

#2 The £8 prescription charge is free for low incomes and pensioners yes? And am I right you can buy a yearly prescription, if so do you know how much it is?

The NHS has started to contract out certain medical departments to the private companies hence BUPA in my area for the dermatology.
Yes Fred you still can buy a 12 month or 3 month prescription voucher .
The updated prescription charges for English residents will be £8.25 per Item from 1st April 2015.
The cost of a prescription pre-payment certificate (PPC), which is valid for three months, will remain at £29.10, while the price of an annual PPC will be £104.00 .

[mataribot]

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.

[Kat]

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.

I agree with most of what you say and I think people sometimes search to find the answers they want instead of the answers they need. I know I am guilty of that at times. I do think the forums offer a representative, granted not a majority but an individual perspective of thoughts.

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 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?

[jiml]

We in UK have our National Health Service which is anything but a National service with each area working more or less independent from each other with their own rules and ideas.
We pay National Insurance tax plus income tax plus VAT plus several other taxes which must account for well over 40% of our income in UK however if you are on benefits such as unemployed then your prescriptions are free. If you are paying then they are over £8 per item but all people over 65 also get free prescriptions .
The service that you get can vary quite a lot with some NHS areas focusing on different strategies which mean that in some parts of the UK cancer treatment is good but elsewhere it can be what is known as in UK, a postcode lottery. This means that it is very hit and miss with an attitude of quite a lot of NHS staff that whatever they do it is right and should it go wrong then they are not to blame with cover-ups the norm. Individually there are good staff but collectively is when it goes wrong.
To be a bit more positive there are a lot of first class treatments in the NHS but from personal experience with both I and my daughter you do have to fight for it.  
My P and PsA treatment has, over the years, has also been very hit and miss and in recent years cost has figured more and more into the equation.
I have been very lucky when we moved because in this area all the dermatology is done privately in a BUPA hospital by a private consultant and the funding is easier which gave me the opportunity to go on to Stelara after 9 years plus on MTX.  The difference between the NHS and BUPA is significant but I suppose that when you look around different countries we are far better off with our NHS than some of the alternatives
When you get the situation that it is costing £8 plus for each prescription item then you will get people looking at cheaper alternatives in the hope that they will work plus there is always a small minority that believe in what can be described loosely as homeopathy which since the internet is easier to obtain with the added influence of "experts" pontificating how good these are.

Just adding to Dave's description of our NHS in the UK I agree with all he says and although our system is stretched  to breaking point in our area I have nothing but praise for the system I doubt if anywhere else you can get a whole years prescription drugs for £104 that's just £2 a week for all medications not just psoriasis. Now while this system lasts I am unlikely to use a non prescribed treatment as there are so many treatments I could go on yet. Getting away from psoriasis and other medical matters

In the UK if you can afford it you can have on top of your NHS entitlement have private health insurance, which I had while my children were still at home, but was unhappy that when I took it out they wouldn't cover an existing condition ( psoriasis) for that I had to be treated by the national health service. My wife became ill at age 40 we went to our GP and he said it looks like kidney problems. I will refer you to the hospital. About 6-8 weeks to wait for appointment.... I mentioned we were BUPA members and he phoned a specialist and we got to see him the same evening... He looked after my wife for 3 years privately. Then BUPA said she was no longer covered as it was a chronic disease .... I gave up private insurance then and we continued NHS with the same consultant
She has had the best attention she could hope for and when the  kidneys failed we had the house modified by the NHS to create a "ward" in the house for us to administer home dialysis.

In my case I was diagnosed Prostate cancer within days I was in the programme and treated quickly
I have never had a problem with the British system. I may just be lucky or perhaps I am in a good area
I would sing the praises of the NHS as loud as I can because my experience has been excellent. At no cost or very little cost

[Caroline]

Yes !!!! I played with my treatment !!! And it was the best thing in my life I ever did ! (Except for some things that have to do with love).

Basically people stay with what they have. And people tend to go the way of normal medicine, standard protocols and registered medication.
So far so good.
But ....... If I had done that, I would now maybe be a tenth of the person I am now. I was so stubborn to get away from MTX and go my own way to a medicine that is not registered but has a long track record in Germany and the Netherlands. A medicine that normal doctors even did not want to prescribe!
I was lucky to bump into it, I do see that. And me too want to shout of the roofs, people, do try my medication!!! But because of the reasons you describe that will not work. So what I do is give a description, support people who are occasionally wanna try, but the ones that will stick to the opinion of their doctors, they must know that for themselves. What I try to do is provide them with information and make them stronger by trying to make them aware that it is their body what is being discussed, not the one of the dermatologist or rheumatologist.
I am very relieved that I followed my way, that I am not on MTX, I do at a certain point want children and my feeling is that MTX is that poisonous that it would have damaged my reproduction organs.

Now I have a low PsA score. And I am able to live quite well with it.

Caroline