Careful if you're importing meds

[Jezza]

Hi,

After finding out that an appointment with a medic that I think might acknowledge the superiority of robinul over other anticholinergics is not able to take place until 7 weeks from now, I looked somewhat further into ordering it online via pharmacy.ca. If I'd try a trial package of 30 pills it would be something like 22 canadian dollars, however shipping it here would be another 30. I'd expected more, so that wasn't the problem.

Because I've imported some things (clothes and stuff, things in the US are usually a lot cheaper than here so even after paying customs taxes it is often profitable or just as expensive as buying stuff here, but with added coolness bonus) before in the past, I wondered what would happen with customs...And soon found out that importing meds personally is against the law...Although our justice system isn't always too strict on things like that it could still get ugly if you happen to come accross some overzealous public servants.

So be careful with this type of thing, you might get in trouble...

However, I did also find some good news I think; IF I can find a doc who deems it necessary for me to get robinul AND is willing to submit that to the insurance company, I COULD potentially still get a prescription for the medicine through the system (eventhough it is not officially on the market here and therefore not covered under insurance) and a pharmacy right here would be allowed to import it for me...So I could pick it up at my local pharmacist's. But a lot of paperwork will need to be done...*sigh*

It's a typical 'in communist the Netherlands' type of thing.

 

[wethandsandfeet]

wow, thanks for the info Jezza. I live in Eindhoven and import glyco from pharmacy.ca. I'll have to think about this now...do dermatologists recommend glyco in the Netherlands?

 

[Jezza]

@wethandsandfeet

Oh Really? The city of my favourite football club no less...

Did you move here from another country where you used to import glyco or did you actually import glyco a couple of times to here already (have you been Dutch all this time )? Because officially it's illegal to import meds on personal title. Of course if you've lived here for some time you know how it goes...When it comes to things like these the law and practise are sometimes a little different...Luck of the draw it seems like oftentimes.

Anyway, dermatologists definitely don't recommend glyco here, just because they don't usually know about it. My personal experience with dermatologists (one at a local hospital and a couple at an academic hospital) is not that positive, ranging from almost complete lack of knowledge about hh to just point blank saying that hh just isn't that of a big deal for them to put it high on the list of priorities..."You should try to look at it a different way..." Right, I can accept that if someone doesn't know much about it, but not if your the friggin head of dermatology at an academic hospital...I've had a better experience with an endocrinologist.

However, there's a list of medications that medics can prescribe here that are covered for by health insurance (public healthcare system, everyone is obligated to buy at least some health insurance but most is paid with the heavy income taxes we have here). Glyco is not on it (well, the substance used as an anaesthetic with I guess an IV is, but not pills or solutions). Now in the meantime I've learned that doesn't necessarily mean it's not available at all (like I also said above), but, it does bring with it another problem; even if they would be prepared to work with you and potentially prescribe this drug, obviously medics have no experience with glyco, and therefore if you go to one asking for it, all this makes them reluctant to prescribe it, which often leads to the ironic situation that they are willing to prescribe oxybutynin and in my case also trihexifenidyl (artane), tertiary amines with a lot of side-effects, but not glyco because they 'don't know' what kind of effects it will have...

So, you'll have to find someone who is willing to do his/her job, which is helping the patient, and convince him/her you need glyco. Maybe if you mention your previous experience with the drug that could help a lot. Chances are that they'll still say they can't prescribe it (which is a half truth, I believe they can, but they'll have to go outside the box) or try to put you on oxybutynin, so I think there's no other option than to be persistent. What you definitely need to do is bring all the info yourself, oftentimes medics here won't do anything themselves (for various reasons) but can't refuse to do stuff if you show them you know a thing or two about your condition yourself. For instance, I went to a dermatologist for HH and the first time he told me there's nothing they could do. Then I did some research, found out there were secondary causes and said I would like to be tested for those. Obviously, because it's really standard protocol in case of quite generalised hh, he couldn't refuse, so at least I got that done, but he wouldn't have done it if I hadn't asked, because in his words, there was only a 10% chance they'd find anything. Obviously you also have a couple who don't like that you know more than they do...but well, so be it.

All the good and bad things that you'd expect from public health care apply really. I guess it's pretty nice you don't go bankrupt if you don't make that much money and break a leg, but at the same time, if you have something a little more rare I guess you'd be better of with a good health care plan in the US, since the power lies more with the individual then, instead of with the doc...But private health care is very limited here by the government, so this is the system you'll have to deal with. I guess be prepared to be dissappointed but still go on after that.

On a side note; how did the Avert work for you, anyway?

 

[wethandsandfeet]

Jezza,
Thanks MUCH for the detailed information about the healthcare system in the NL. Although I moved here almost a year ago from the US, I still feel kinda new here. I try to manage my HH mostly through ionto but the result are too inconsistent and irregular, and I've Avert since almost a 2 years now to control the HH on days that ionto does not work. It works OK for palmoplantar HH but I absolutely hate the fact that it stops sweating all over even during a physical workout which is obviously bad for the body. However, although I've researched HH a lot, I dont know of any other way of managing my palmoplantar HH (i'd rate it 10/10 in terms of severity). Given the info you've provided, looks like I'll have to stop ordering Avert from pharmacy.ca.

What kind of HH do you have and how to you deal with it?

 

[Jezza]

Hi,

I mainly have palmoplantar HH as well, but it has become more generalised over time. When I was about 13 I just got some mild dampness now and then on my hands and usually I didn't even notice feet sweating because the socks probably were able to deal with the amount of moisture. It then gradually got worse and worse, but only in the 6th (final) year of highschool (I was 16) it started to become a problem in gym class as well. Really strange...all the previous years I used to play soccer and basketbal when we had an hour off in between classes. Everyone would just be in their normal clothes, apply some deodorant at the end and go on with the day. I never had any problems with wet clothes or anything like that. That is really weird to me now.

Then slowly I started noticing my armpits getting stained more often, and even worse, I started to pick up truncal sweating. Again, it got worse and worse over time, but it took me until I was 19 (which is also very strange to me now) till I 'found out' about HH and that it's not something that is going to pass by itself. Now, sometimes also my legs and lower back sweat heavily, but my face remains unaffected 'knock on wood'. Although I try to live as normal as possible it affects my life quite badly, both socially and now it's starting to affect me more and more professionally as well as I now really need to decide what to do after college.

Anyway; how I deal with it...I tried I guess everything that I know of except ETS (no real option) and robinul. I have an Idromed 4 GS here but it doesn't really work for me...I've had botox injection but it's no complete solution and, because most hospitals don't do them in hands and feet, or not more than 12 injection per hand anyway, although my insurance would cover the treatment on paper I can't find a hospital without a waiting list to do it, so I have to pay for it myself, which given the fact that I'd still sweat a lot from other places is not worth it (paid Euro 900.-) last time. I've been to a private clinic in Germany (restricted in the Netherlands) to have a full body scan without any result (but I needed to do it, otherwise I would have kept wondering about secondary causes). Well you get the idea.

I've set my hopes on robinul for the moment which seems a good idea for the HH I have and to possibly use it with iontophoresis (add it to the trays) but as you know, I've yet to find the doc who's willing to stick his/her neck out to prescribe it for me (I have not been really going for robinul for a long time though, so don't be too discouraged with that, all the other things have taken me a long long time, usually there is about 4 or 5 weeks between appointments with docs, and there is the occasional detour here and there, for instance when I was diagnosed with diabetes one time, which I didn't have in the end...Unfortunately...there has never been a person happier to find out he would have diabetes I think (I thought, at last, something that's easily treatable, but no such 'luck'). Not that I'd want to dismiss the seriousness of diabetes, but those were my emotions at the time.

I've looked further into the importing meds issue; this is from Dutch customs (in english): http://www.douane.nl/particulier/reizigersbagage/en/reizigersbagage-08.html

This is mainly intended I guess for when you take meds here when you fly in, but I guess something similar also hold true for when buying of the internet (it's linked through that section).

"If you use medicines, please ask your general practitioner for a medical passport in order to prove that the brought in medicines are intended for your own use. Customs and other investigation services will check whether you have complied with these rules. If you don not comply with these rules you will be liable to punishment and can be prosecuted."

That spelling error in there is really unprofessional, but that IS the official site of Dutch customs...